Summer 2015 The magazine for everyone living with EB

The excitement of Members’ Weekend See page 6 Plus • A day in the life of an EB Clinical Nurse Specialist • Research: Q and A with Prof. Hovnanian and more…

Book your holiday now Prescriptions ordered on the go – see page 10 – see page 12 www.debra.org.uk

This edition sponsored by Clinidirect. Welcome

Welcome to the summer edition of In Touch I’d like to begin by thanking everyone DEBRA is committed to offering who came to DEBRA’s Members’ the best possible care and support Weekend and AGM this year – over to people living and working with 300 people attended, including over EB. Please continue to share your 100 people with EB, and their families, views and stories with us. We will making it the largest event for DEBRA soon be launching a new fundraising members to date. e-newsletter which you may receive if you’ve opted in to fundraising mail – Special thanks go to the EB clinicians, you will be able to unsubscribe should nurses and healthcare professionals you no longer wish to receive it. who gave up their time to attend, hold exhibition stands and lead or If you have any ideas for activities participate in Q and A sessions. For for future Members’ Days or a flavour of the excitement of the potential venues please email weekend please turn to pages 6 – 9. [email protected] call the Membership Team on 01344 DEBRA UK is also proud to be 771961or contact me directly. hosting EB-CLINET and the DEBRA International conferences for clinicians In this issue and professionals in London this Best wishes, year (24 – 26 September), providing Members’ Weekend 6 unparalleled opportunities for leading clinicians and DEBRA organisations Getting together Claire Mather from around the world to share in Birmingham 3 knowledge. Keep an eye on our Director of Healthcare, Membership Designed for living 12 and EB Community Support website for the conference report. Research 16 EB bereavement support 17 EB Simplex Meeting (Scotland and the North) 2015: watch this space! Prof. Irwin McLean and the team from the University of Dundee will be holding this year’s EB Simplex (EBS) Patient Meeting at the University of Dundee – In Touch date to be confirmed. We’ll let you know as soon as we have further details – keep your eyes on www.debra.org.uk and the next issue of In Touch. Prof. is looking McLean and the team hope to hold further meetings for those in the north of England (spring 2016 – tbc) and the south of England (autumn 2016 – tbc). for you

If you are a DEBRA member living or working with EB and Connect with other people have a story to tell, a piece of living with EB news to share or an idea for an article you would like Visit the EB community on www.rareconnect.org to connect with each to see in In Touch, please other, share experiences and find helpful information and resources. email Miranda Lloyd at [email protected], Visit us on Facebook at www.facebook.com/DEBRACharity call 01344 771961 or write in for the latest news from DEBRA. using the details on the back of this magazine. Thank you! and follow us on Twitter @charityDEBRA. Main cover image credit: James Bastable Photography

Disclaimer: Articles in this publication have been written by people living with EB who have found certain products or services useful. DEBRA does not endorse any products or services mentioned in this publication, and will not be held responsible for any consequences arising from the use thereof. DEBRA is not responsible for the content of any external websites.

2 DEBRA In Touch Summer 2015 Your news Getting together in Birmingham

DEBRA member Gena Lenihan gives us her thoughts on the Get Together for people living with EB in Birmingham: Two of my children – Bryn (16) and Dylan (11) – have EB Simplex. What worries me most is how my boys will manage when they start to gain their independence. Bryn will be making the transition to adult services soon ‘If you let EB become bigger and as parents, we’re trying to equip him to manage his EB on his own than it is you are not going to and look after himself. Attending the get together in Birmingham was a be able to live a normal life.’ great opportunity to meet other young people living with EB, and to know Myra Ali, who has Dystrophic that they are managing the condition and getting on with their lives. EB, shared her thoughts on living with EB. Catching up with other people living with EB does provide reassurance ‘A lot of people with EB, especially parents, came with a lot of questions The day was also a rare chance to meet many of the new members of staff about the condition and what the in the EB teams at both Birmingham Children’s Hospital and Solihull Hospital, future holds. It was wonderful to work which was great. Although there’s no cure and we manage the condition together to answer some of those well at home, our relationship with the EB nursing team is really important. questions. Having the chance to talk It’s always good to keep up to date with the latest dressings, and to know to so many other people of different you can pick up the phone and get friendly, helpful advice when you need it. ages and backgrounds living with EB also made a huge difference.’ Bryn particularly enjoyed talking to Carol Knowles, EB Clinical Nurse Zainib Hussain, DEBRA EB Specialist at Solihull, who took the time to speak to him as an adult. She Community Support Manager gave him some tips on how to care for his feet – he felt quite good about it after speaking to her. ‘The Get Together was a great DEBRA has made a 100 percent difference to our lives. If ever I need some opportunity to meet younger patients information or an answer to a question I go to DEBRA. Going to events like and answer their questions about the services available for adults with EB. the Get Together and catching up with other people living with EB does We hope that, by working with provide reassurance. DEBRA and the team at Birmingham Gena Lenihan Children’s Hospital, we can make the transition from paediatric to adult care as smooth as possible for people living with EB.’ Carol Knowles, EB Clinical Nurse Specialist, Solihull Hospital

‘Never count yourself out.’ Amy Price, who has Dystrophic EB and is a DEBRA Trustee, spoke eloquently on the day.

‘As an EB nurse, I think it is important to see people living with EB and their families outside the clinical setting. It’s also very important for children living with EB to meet other people living with EB and share experiences. The get together in Birmingham was the perfect occasion to work together and achieve this.’ Lisa Burns, EB Clinical Nurse Specialist, Birmingham Children’s Hospital

Gena (left), Gareth (right) and Qassim (centre) met on the day.

DEBRA In Touch Summer 2015 3 A day in the life of ... An EB Clinical Nurse Specialist

The alarm goes off Dr Mellerio starts 5.30am We all have a love- 3pm and it’s time for a hate relationship with our to see the patients. quick breakfast. I take Each consultation mobiles my dog out – he doesn’t really want to can take up to 40 minutes. On an leave the house but he has no choice. average day five patients attend Off to theatre with the 8.40am these clinics, sometimes more, HoverMatt – an I catch the bus into often with very complex needs. 6.20am inflatable patient The last patient leaves around 6pm. London. It’s doubly transfer aid – and a box of dressings important I’m in by suitable for people with EB. The 8.30 today as a patient is having an HoverMatt is all important. It reduces It always makes oesophageal dilatation, a procedure friction on the skin and means we can me smile when that many patients with Dystrophic EB transfer the patient safely with minimum I hear Big Ben have to help improve their swallowing. discomfort – one of the great pieces of strike I use the time to check my emails. We equipment purchased for us by DEBRA. all have a love-hate relationship with our mobiles. Since I turned it off yesterday We are all done. The patient is on their 6.30pm evening there have only been 20 10.30am It’s been a very long way to the recovery messages! I prioritize them – there’s day but it’s always ward but the day is everything from an urgent query from a worth it because it helps make a just beginning. Most of the EB nursing patient to a notification about a meeting difference to people living with EB. team are in today except Caroline I need to attend in a month’s time. Mackenzie, EB Clinical Nurse Specialist, who is visiting a patient at home. Chris Bloor – EB Clinical Nurse It’s always worth Specialist, Guy’s and St. Thomas’ Hospital it because it helps Now I’m off to the Dermatology Day make a difference Centre for Dr Mellerio’s monthly Chris is part of a team of five EB Clinical multi-disciplinary clinic. My fellow EB to people living with Nurse Specialists employed by the NHS EB Clinical Nurse Specialist Pauline is at Guy’s and St. Thomas’ Hospital. co-ordinating today, welcoming DEBRA funds 25% of the salary of patients and helping to familiarise Traffic is very heavy each EB Clinical Nurse Specialist in the 7.30am them with the layout of the clinic and so I abandon the team, enabling them to offer an the facilities available. This ensures enhanced healthcare service to people bus and jump on the smooth running of the clinic and living with EB. Find out more at the tube, popping up at Westminster, enables patients to get the most from www.debra.org.uk\nhspartnership. right next to the Elizabeth Tower. the day. A colleague nabs me to take Thank you to Jane Clapham (pictured below), a blood sample from a patient and Annette Downe, Pauline Graham-King and I am not the first 8.25am insert a cannula for an iron infusion. Caroline Mackenzie for their contributions to in the office today – The iron should help the patient feel this article. colleagues are busy less tired, aid wound healing and preparing for the weekly clinical team reduce itching. A trip to the pharmacy meeting, where we discuss patients’ to collect the infusion means another treatment plans and exchange half mile walk across the hospital – important information. There’s I’ll be getting plenty of exercise! just time for a quick coffee – thanks to a Christmas present from Dr Mellerio, The multi-disciplinary . 2pm Consultant Dermatologist, we have team (including a lovely machine that brews in a flash. doctors, surgeon, dentist, nurses, physiotherapist, The anaesthetist occupational therapist, dietitian, 8.35am calls about today’s psychotherapist, pain specialist and a patient – we make DEBRA community support manager) Image credit: Keith Sibbick sure that the equipment is available to meet to discuss the needs of the Juggling a variety of tasks is all part of a day’s ensure the procedure goes smoothly. patients attending today. work for an EB Clinical Nurse Specialist.

4 DEBRA In Touch SpringSummer 2014 2015 Welcomes

Angela Whelan – EB Clinical Nurse Specialist I am new to the EB team at Great Ormond Street Hospital (GOSH). I have over 10 years of experience of working with children with complex conditions and disabilities and their families in a variety of settings, ranging from intensive care to hospice care and community care in south east London. I have a sense that the team here at GOSH are truly experts in all aspects of EB, as well as innovators in new research and treatments. I am looking forward to developing my own knowledge in this speciality as part of such a committed team. I am so impressed by the courage of the people I have met who are living with EB and truly hope I succeed in supporting those I care for with this challenging condition. Angela Whelan

Victoria Warren – EB Clinical Nurse Specialist I’m an EB Clinical Nurse Specialist at Birmingham Children’s Hospital (BCH). My role is to give holistic care and support to children living with EB and their families to help them live life to the fullest. My role is very interesting – no two days are the same and I am fortunate to be able to learn and develop new skills every day! I have previously worked in neonatal intensive care caring for critically ill babies. I am very much looking forward to getting to know the children and families in our care and in conjunction with each other develop the EB service and the work of DEBRA. Victoria Warren

DEBRA Chile opens new EB treatment centre On 1 April DEBRA Chile opened EB House, a specialist treatment centre offering support and medical care for people living with EB in Chile and beyond. The new site holds improved medical facilities and the DEBRA Chile office. Educational workshops for parents and caregivers will be organised here and there’s even a cosy playroom where the children can entertain themselves during their visits. An exciting day: people living with EB enjoy the new EB House in Chile. Image credit: DEBRA Chile.

DEBRA In Touch Summer 2015 5 Members’ Weekend at Drayton Manor

Members’ About Jeans for Genes Jeans for Genes Day (www.jeansforgenesday.org) raises money to provide support and care for children Weekend with genetic conditions. Genetic Disorders, the charity that runs Jeans for Genes Day, has a vision to improve The 2015 DEBRA Members’ Weekend (made possible by the lives of families affected by genetic conditions. a generous grant from Jeans for Genes), the first two day By raising as much money as possible on Jeans for members’ event and AGM was a great success – over 300 Genes Day they aim to launch much needed support people attended, including over 100 people with EB, their services and increase the number of grants provided to families and healthcare professionals, making it the largest event for DEBRA members to date. condition-specific charities like DEBRA. Attendees enjoyed making new friends and catching up with old acquaintances in a relaxed setting. Leading researchers, specialist EB nurses, occupational therapists, dietitians, DEBRA’s community support managers, and representatives from Changing Faces and DEBRA were all on hand to answer members’ questions in a variety of lively sessions.

It was an amazing weekend with About Changing Faces amazing families Changing Faces provides practical and emotional Guests also took the opportunity to browse the exhibition support to people living with conditions that affect stands, meet representatives from healthcare companies their appearance. and learn about some of the healthcare products available to people living with EB. The DEBRA pop-up charity shop Changing Faces proved tremendously popular, especially with children – • provides tailored support services to adults, members purchased jewellery and trinkets to complement children and young people their outfits in preparation for the ‘Glitz and Glam’ theme of the evening, which brought with it dinner, dancing and • produces a range of free self-help guides gasp-inspiring entertainment from magician Russ Brown. • trains, supports and advises professionals in health, education and social care The day was wonderful – • runs the national Skin Camouflage Service it was a day • campaigns for ‘Face Equality’ in the media and to forget about EB for changes to public attitudes If you didn’t come this year, make sure you come next • lobbies for integrated health services year! Keep an eye on these pages and on and anti-discrimination protection and www.facebook.com/DEBRACharity for details of next law enforcement year’s members’ event and other DEBRA events near you. To find out how Changing Faces may be able to support Thank you to our event sponsors: Activa Healthcare, you please visit www.changingfaces.org.uk, call Aspen Medical Europe, Bullen Healthcare, Clinidirect, 0845 4500 275 or email [email protected]. Clinimed, H&R Healthcare and Urgo Medical.

Premium exhibitors:

Suggestions for future Members’ Days If you have any ideas for activities you would like to take place at future Members’ Days, or suggestions for potential venues, please let us know by emailing [email protected] or calling the Membership Team on 01344 771961. Image credit: James Bastable Photography.

6 DEBRA In Touch Summer 2015 Members’ Weekend at Drayton Manor

Photography competition winners Drayton Manor Theme Park and Zoo was the highlight of the day on Sunday 17 May! These results from the Members’ Weekend photography competition capture the fun of the day. Thank you to everyone who took part.

Category: a photo Winner: Bryce Patterson with new friends This is me and my new made at the weekend friend Emily having the best time ever

Category: a creative Winner: Joseph Pearson photo that includes It was lovely the DEBRA logo or to catch up with a butterfly everyone

Category: best Winner: Leah Morris expresses ‘a fun day A big thank you at Drayton Manor’ to DEBRA and Jeans for Genes for an absolutely fabulous weekend

Category: best selfie Winner: Daisy Pearson with a background I had a really from the park fun weekend

DEBRA In Touch Summer 2015 7 Members’ Weekend at Drayton Manor You said… The best thing about Members’ Weekend was… • sharing experiences with other people living with EB • chatting to healthcare professionals and meeting DEBRA staff • catching up on the latest research and gathering information • learning about the different dressings and products available to people living with EB • the venue!

My children realised they Image credit: James Bastable Photography. are not the only sufferers of EB Young DEBRA members enjoyed the activities on offer. offer.

How Members’ Length of the talks Activities for children Weekend could Some attendees enjoyed the in- 93 children attended the Members’ depth talks, while others found that Weekend, over half of whom had some of the sessions were too long, have been even better EB. Younger children enjoyed the or repeated material they had heard tea party, arts and crafts room before. We always aim to strike a Travel time and garden games, although balance between the needs of people some attendees would have liked To make sure as many different who are new to EB and people who childcare for little ones on the first people as possible get the chance to have heard some of the information day. We do appreciate this made it attend the annual members’ event, before, but we will try to ensure the we try our best to alternate the speakers are even more varied difficult for some parents to attend location between the Midlands and next year. all the talks and we will consider the south of England each year. providing childcare next year. To maximise the places available Many DEBRA members would like Talking time to people living with EB we regret to see more local DEBRA events, Even after two days almost it was not possible to allow especially after the success of the everybody who attended wanted extended family to attend to assist Get Together in Birmingham (see more time to chat, meet other with childcare. We hope entry to page 3) and the Children’s Party in people living with EB and make Drayton Manor Theme Park and Glasgow (see page 14). We will look new friends! We’re exploring ways Zoo on Sunday helped make up into holding more small-scale regional to maximise the time for mingling for the lack of activities for teens events in the future. and browsing the exhibition stands on the Saturday! in future, and still include Q and A Quality of the food sessions and talks, which attendees Some attendees mentioned the also felt were important. Other Thank you catering as an area for improvement. possibilities include providing an Although every effort was made when optional contact list, enabling A massive thank you to everyone planning the event, we hear what you attendees to stay in touch easily who took the time to give feedback say and will take steps to make sure after the event. In the meantime, on the day – we’ve received some there is more fruit, vegetables and don’t forget to join our lively online very positive comments and salad at future events, and will work community on Facebook you’ve also helped us have a good with the EB dietitians to ensure there (www.facebook.com/DEBRACharity) understanding of areas which is a wider range of EB-friendly food. and Twitter (@CharityDEBRA). we need to improve in the future.

8 DEBRA In Touch SummerSpring 2014 2015 Members’ Weekend at Drayton Manor DEBRA’s accounts DEBRA’s accounts for 2014 were approved future charitable spend, and in particular EB research. at the Annual General Meeting on 16 May However, the availability of good research projects and we’re pleased to announce that last can mean that the timing of this spend is not uniform – one year there might be lots of projects worthy of year 81p in every pound raised was spent funding, other years, very few. So, by reserving these on charitable activities. funds we are planning for the future and making sure money is available to spend on high quality research How is this figure worked out? projects when it is needed. This is especially important We take our charitable spend figure and first add the as some EB research is now entering the clinical trial increase in our reserves, or subtract the decrease in our phase which is incredibly expensive, significant funds reserves. Then we divide that figure by our total income will be needed. To prepare for this every year the (including only the net income from our trading activities): trustees designate any surplus funds above the DEBRA Reserves Policy minimum to future research projects. Charitable spend: £3,380k Increase/(decrease) in reserves: (£358k) To view our accounts in full please visit Total income (taking trading activities net): £3,721k www.debra.org.uk/annualreports. = 0.81 or 81p in every £ If you have any questions please email Planning for the future [email protected] or call 01344 771961. DEBRA holds quite large reserves, a significant proportion of which are restricted to, or designated for, Carol Harris – Director of Finance, DEBRA

Are you a patient at Great Ormond Street Hospital? Try their new EB Telemedicine service

DEBRA and Aspen Medical are proud to support Photographs submitted to the telemedicine service will the new telemedicine service launched by the be assessed by the multidisciplinary EB team every multidisciplinary EB team at Great Ormond Street Thursday, when your message will be responded to. Hospital (GOSH). The service offers wound care advice If you have an urgent enquiry please call the specialist by email and telephone, enabling children living with EB nursing team 0207 8297808. EB to receive expert wound care without having The telemedicine service will not take the place of essential to travel to hospital. out-patient appointments or in-patient admission.

Who can access the telemedicine service? Jackie Denyer – Lead EB Clinical Nurse Specialist, Currently, the telemedicine service can only provide Great Ormond Street Hospital wound care advice for people living with EB registered as patients at GOSH. Parents or carers can access the service on their child’s behalf.

To access the telemedicine service: • Email a photo of your child’s wound or wounds to both of these dedicated secure email addresses: [email protected] and [email protected]. • Complete and return a wound care checklist (this will be provided once the photo has been received). • The multidisciplinary EB team at GOSH will assess the wound and call or email you to discuss treatment options and a treatment plan. The EB team at GOSH is delighted to launch the telemedicine service. Image credit: Elaine Gibson.

DEBRA In Touch Summer 2015 9 SectionEB Community name in Support here Book your holiday now! As a DEBRA member, why not take advantage of a stay in one of our beautiful holiday homes? We still have plenty of availability in early July, September and October. With four DEBRA holiday homes to choose from, there’s something for everyone. Rockley Park, Poole Waterside Holiday Park Did you know...? On Saturday 25 April the Mayor and Spa, Weymouth • If you are a DEBRA member and of Poole, Councillor Peter Adams, DEBRA has two holiday homes at you have EB you can use the opened a brand new holiday home this five-star holiday park right on the DEBRA holiday homes, no matter at Rockley Holiday Park on behalf beach at Bowleaze Cove, beside one what type of EB you have! of DEBRA. of Dorset’s most stunning stretches • You can use the DEBRA holiday of coastline. homes whether you’re planning to Having the opportunity go on your own, with a partner or to enjoy a break away Enjoy a varied entertainment with children. makes a real difference programme at the park, • If you are accompanying someone with including: EB, family members and carers can Freddie Algate, who has EB Simplex, also use the DEBRA holiday homes. and his family (pictured) are one of the • live music and magic shows • You can check availability using the first to enjoy the DEBRA holiday home • comedy evenings up-to-date availability calendars on at Rockley Park. • daily entertainment for children! the DEBRA website. On-site leisure opportunities Brynteg Holiday Park, include: North Wales To book now • access to the owners’ lounge, As well as taking in the stunning Call the Membership Team pool and bar countryside, enjoy a packed calendar on 01344 771961 or email • water sports of amazing events and leisure [email protected]. • live shows activities including: To find out more • bike hire • themed pool parties • visit www.debra.org.uk/ • an exciting range of kids’ clubs • kids’ clubs holidayhomes and activities • weekly Movie Mania showings • email [email protected] • country club bar We look forward to taking your holiday • delicious dining home booking.

Priority booking dates for 2016 1 October 2015 Members who did not stay at a DEBRA holiday home in 2015 but wish to holiday in 2016 can book. 1 November 2015 Members wishing to stay during the school holidays in 2016 who did not stay in a DEBRA holiday home during school holidays in 2015 can book. 1 December 2015 All DEBRA members who would like to book a stay in a DEBRA holiday The Algate family with the Mayor of Poole, Councillor Peter Adams, at the opening of brand new home in 2016 can book. holiday home at Rockley Holiday Park in Poole.

10 DEBRA In Touch Summer 2015 EBSection Community name Support in here

One of DEBRA’s dedicated EB Community Support Managers, Helen Weaver, with a client. Your Community Support Manager will work with you to enable you to deal with a problem or issue. Support for you DEBRA’s EB Community Support Team is on hand to offer you crucial information and support to tackle a wide range of issues such as: • benefits • finance • housing • education • employment No issue is too small or too silly – contact your community support manager using the details on the back of this magazine or if you’re not sure who to talk to call 01344 771961 or email [email protected]. Resources to explore: holiday and leisure activities Contact these organisations directly: The Scott Ward Schofield Memorial Fund The Merlin Magic Pass The Scott Ward Schofield Memorial Fund is now the proud owner of Scott’s Caravan – a beautiful three The Merlin Magic Pass scheme, which offers entry into 31 bedroom, six berth caravan near Blackpool. SWSMF theme parks and attractions around the UK, provides a free provide holidays, short breaks and days out for people transferable carers’ pass to disabled Merlin Passholders. with EB, specifically those with Junctional and Dystrophic To find out more and see if you are eligible visit www. types. The caravan is also open to bereaved EB merlinannualpass.co.uk/disabled-passholders.aspx. families. To apply for a holiday or short break just email [email protected] Cinema Exhibitors’ Association Card with the full names for all your party and your preferred If you love going to the cinema you can get a card which holiday dates. enables you to take your carer for free. Find out more at www.ceacard.co.uk. Hidden Depths Canal Cruises Hidden Depths Canal Cruises are generously offering Disabled persons’ railcard DEBRA members living with EB and their families and Get a reduction on rail fares for the cardholder and a carer. carers boat trips from Kings Cross. Please call Hazel Opens the door to other discounts and offers. Find full Ewens (Membership Manager) on 01344 771961 for details at www.disabledpersons-railcard.co.uk. more information.

DEBRA In Touch Summer 2015 11 Designed for living

Prescription delivery mobile app

I started using a prescription delivery service when I was gave me the knowledge I needed to make the prescription studying 3D design and animation at university. It was delivery app a reality. Despite having many projects and better than trying to find the time or energy to pick up my deadlines on my hands I started to create a few designs prescriptions or collect medicines from the pharmacy while showing what I wanted the app to look like and mocked coping with the demands of full-time education. However, up a video showing how it could work. having hospital appointments or even just bad days with my EB meant that I’d frequently miss my delivery slot and It’s made my have to spend ages placing my order again and rearranging life easier delivery. I wanted something more efficient, something that would mean I didn’t have to spend 20 minutes in During this time I had just switched to the Clinidirect front of my laptop fiddling with a long list of medications. prescription delivery service from Clinisupplies and I That’s when I thought how great it would be to have an approached them with my idea. I was delighted when they app for ordering and arranging deliveriesof dressings and said they had showed it to their IT specialist and were medications quickly through a mobile or tablet. going to take it on board and develop it. After quite a few meetings with the Clinidirect IT team, the app, EB Meds I wanted something 2U, is now ready to use and available to download for free more efficient from Google Play and the App Store. Try it and see what you think – it’s certainly made my life easier. How to make a mobile application was a mystery to me until we had to design one for a university project. This Christo Kapourani

Why try the app? • Place your orders on the go without any problems • Choose from a huge database of medications and dressings • Easily change your order to suit your needs – just enter a few letters to find the product you want • Choose a delivery date and time slot to suit you • Receive order confirmations and reminders of your chosen delivery dates and times

Visit www.clinidirect.co.uk/ebcommunity or contact Clinidirect on 0800 0126779 to find out more about the prescription delivery service.

DEBRA members Kieron and Christo (pictured below) did a fantastic job of explaining the app in a short video. Watch the video at www.youtube.com/watch?v=ELiOHdWdA7E now to see the app in action.

We’re delighted to support DEBRA and bring this innovative free app to the EB community – we hope it will make a real difference to people living with the condition

Hemang Badiani, Managing Director at Clinisupplies Limited.

Clinidirect is a nominated sponsor of DEBRA and provides valued financial support, contributing to the services offered by DEBRA, as well as the research priorities backed by DEBRA.

12 DEBRA In Touch Summer 2015 Designed for living

Ginger Shampoo Safety Shoes I have been in the construction and Banana industry since school and have had terrible problems Conditioner finding suitable footwear once health and safety laws came I use the Ginger Anti- into play. Standard safety boots exacerbate my EB Dandruff Shampoo Simplex especially during hot, humid weather. They from The Body Shop are generally all very similar – very inflexible with (www.thebodyshop. rough internal seams and steel toecaps. co.uk). It’s so refreshing The V6 ‘Plumber’ shoes from V12 Footwear and the slight smell (www.v12footwear.com) are the best safety shoes of ginger is not I have come across. They cost around £68 and overpowering. I was they are supple, pliable and very lightweight, with a surprised the shampoo cushioned insole unlike standard rigid boots. They didn’t sting – I thought it might have because of have a built in composite toecap fitted to the inside the ginger but it doesn’t. Best of all, my scalp is not of the boot rather than a steel one. The insides of half as itchy as it used to be. I also use The Body the shoe are virtually seamless which also helps Shop’s Banana Conditioner – again it has a gentle massively. Most importantly, they comply with the scent which is not overwhelming. standard safety requirements for footwear. If you’re not sure this is for you, I would recommend Before I bought these shoes I had to finish work buying the smaller 250ml bottle of shampoo to at midday as my feet would become too painful. try and see how you get on. Once I was sure it Although I still have to use gels and plasters to didn’t sting, I went for the bigger bottle (400ml) and ‘manage’ my feet during hotter weather, I can now haven’t gone back. Unfortunately, the conditioner get through my working day relatively pain free. I is only available in the smaller size, but it does last would most definitely recommend these shoes, quite a while. They’re a bit on the expensive side, although I would suggest buying a size bigger than but they’re well worth the money – I really do love your foot as this also reduces the friction. these products and would recommend them. Kevin Roberts Rhian Edwards Images credit: The Body Shop. Image credit: V12 Footwear.

Recipe: apricot tea loaf Ingredients Method 100g ready-to-eat dried apricots, chopped Grease and line a 1kg loaf tin. 100g sultanas Put dried fruits and sugar in a mixing bowl, add hot tea 100g raisins and mix together. Leave to soak for 4 hours or overnight. 150g caster sugar 300ml hot strong tea Mix the flour, bicarbonate of soda and cinnamon 275g self-raising flour together, add to the soaked fruit with the beaten 1tsp bicarbonate of soda egg and mix together well. 1 tsp ground cinnamon Pour into the loaf tin, level the surface then bake at 1 egg, beaten 160°C/gas mark 3/fan oven 150°C for about an hour, until skewer comes out clean when inserted into the centre. Recipe kindly provided by Rosie Jones – Specialist Paediatric EB Dietitian, Birmingham Children’s Hospital

DEBRA In Touch Summer 2015 13 Designed for living

A great time was had by all… DEBRA’s Children’s Christmas Party took place in It was wonderful December at Hampton Park in Scotland. Guests had the to be with opportunity to meet and chat to other parents and children living with EB, dance, play games, win prizes and enjoy a other families party buffet, delicious cake and Tunnock’s treats. Families travelled from throughout Scotland to enjoy a day filled with laughter and excitement. Santa even paid a visit, distributing presents and selection boxes to the children. We all had a great time. I love my present and all the chocolate

A big thank you to everybody who supported the event: the people living with EB and their families who attended and made the day so special, Jaye Hamilton (Regional Fundraising Manager for Scotland) for helping to source toys and treats, the wonderful volunteers from DEBRA’s charity shop in Glasgow for running a creative Christmas stall at the event, Sondra Butterworth (Regional EB Community Support Manager for the North) Zainib Hussain (Area EB Community Support Manager for the North), and of course the jolly man in red, Santa, for bringing festive flair to the day. It was a really enjoyable day

Beth Davenport – Area EB Community Support Manager for Scotland and the far North of England Santa gave sweets and presents to the children.

Recipe: veggie brunch pockets Ingredients Method 2 lettuce leaves, shredded Preheat the grill to high. 1 tomato, sliced Put lettuce, tomato and mint in a bowl and toss Fresh sprig mint, chopped together with olive oil. Season to taste. 1 tsp olive oil Place the halloumi slices on a baking tray and grill for 3 thick slices halloumi cheese about two minutes until turning golden then turn over 1 pitta bread and grill for a further minute. Cut the pitta bread in half and grill for a few seconds on each side until each half puffs up into a pocket. Fill with halloumi and salad and eat! Recipe kindly provided by Rosie Jones – Specialist Paediatric EB Dietitian, Birmingham Children’s Hospital

14 DEBRA In Touch Summer 2015 Designed for living

Skinnies WEB garments have improved my quality of life Then I was asked to participate in a trial part of my clothing. They are also for Skinnies WEB garments. These are reusable and cost effective – they can designed to hold dressings in place, go in the washing machine with the rest eliminating the need for bandages. of your laundry. If I need replacements These garments, which come in a I just ask my G.P as they are available range of shapes and sizes, have on prescription. improved my everyday life. I have seen a vast improvement in the condition of The fingerless gloves help keep my my skin as the fabric is breathable and fingers from becoming webbed my skin is less sweaty. I can move more together therefore delaying the need for freely than I did before, making driving hand surgery. When I used bandages and walking a lot easier. Dressing webbing and contractures would recur

Image credit: Skinnies UK. changes take less time and my knees far more frequently, meaning I would are not as stiff as they used to be. need corrective surgery sooner rather I used to use bandages to hold my than later. dressings in place. They were very I wear crotchless leggings, fingerless restrictive, especially round my knees, gloves, arm sleeves and socks. They I know these garments may not suit elbows and neck. They would also are made of a stretchy material that everyone, but I can’t imagine my life move over time, sticking to the healing can simply be pulled over the main back in bandages. wounds, delaying healing and requiring dressing. I put my normal clothes on long periods of time to soak them off. over them and they look like they are Rhian Edwards

Recipe: olive and ricotta pâté Ingredients 450g ricotta cheese 50g parmesan cheese, finely grated 2 medium egg whites, lightly beaten 190g marinated green olives 185g pitted black olives 4 sundried tomatoes, roughly chopped 2 sprigs fresh rosemary leaves Blinis or bread to serve Method Preheat oven to 200ºC/gas mark 6/fan oven 180ºC. Oil and line a 20cm sandwich tin. In a large bowl beat together the ricotta, parmesan, egg whites and season. Spoon into prepared tin and level surface with back of a wet spoon. Press the olives, sundried tomatoes and rosemary into the surface. Bake for 25 – 30 mins until firm. Turn out and remove paper, serve on blinis, soft crackers, toasted wholemeal muffins or your favourite bread. Recipe kindly provided by Rosie Jones – Specialist Paediatric EB Dietitian, Birmingham Children’s Hospital

DEBRA In Touch Summer 2015 15 Research

GENEGRAFT nears early clinical trial stage DEBRA International is a partner in the five year GENEGRAFT research project, which aims to develop a skin-grafting gene therapy for RDEB.

is either missing or faulty in the skin of The production methods are to How will the people with RDEB. Only the grafted the highest clinical standards and GENEGRAFT area of skin will have the RDEB fault preclinical studies are testing the corrected but such a therapy type safety and stability of the vector gene therapy work? could be very valuable for people who and the corrected collagen gene. Skin grafts are being made of the have areas with non-healing chronic When the essential safety studies are two types of skin cell – keratinocytes wounds. The technology being completed, and regulatory approval and fibroblasts – derived from the developed for this project will also be has been obtained, the project will patient’s own skin and genetically very useful in helping to develop be at a stage where the first patient corrected in the laboratory. The lab- other gene- and cell- therapies. can be enrolled in the trial (20 people grown skin containing the corrected The project has now achieved living with RDEB have been identified) cells is then grafted on to the skin of several key steps, including the and receive the gene-corrected graft. the person with EB. It is expected development of a safer system for that the skin cells in the graft will putting the correct collagen 7 gene Learn more at produce the collagen VII protein that into the patient’s own skin cells. www.debra-international.org.

Q and A with Prof. Alain Hovnanian What are your main research interests in EB? My main goal is the development of effective strategies for localised and systemic treatment for RDEB patients. We are developing approaches based on what we know already about EB. However, our knowledge of the condition is incomplete –there is a need to establish a much deeper understanding. It’s 12 years since I identified the first genetic mutation known to cause RDEB. I also showed by the same technique that RDEB was not caused by collagenase (an enzyme that breaks down collagen) as was thought at the time. How did you get interested in EB research? Image credit: Institut Imagine/Laurent Attias. During my medical training one of my patients was a young girl affected by RDEB. I just could not accept that we did not know what was causing the condition. I had a friend who was studying for a Master’s degree in genetics, and he told me about genetic research – I realised that if we could collect information on enough affected families we could map the gene. I decided this was research I had to do. What do you think are the most promising therapies currently being developed for people with RDEB? There are exciting developments in cell therapy, especially where genetic correction of the EB fault in a person’s own stem cells is being done. There is also real hope for the use of drugs in combatting the chronic inflammation which is so damaging in RDEB. What do you enjoy doing when you are not busy with research? Travelling abroad – to learn about other cultures, go to new places, meet new people and learn from them – that’s my main interest. Prof. Alain Hovnanian

16 DEBRA In Touch Summer 2015 In memory

Bereavement support from the DEBRA EB Community Useful resources Meeting other people Support Team Grief Encounter (www.griefencounter.org.uk) supports bereaved children and families through At some point in our lives we will all grieve for a loved one. Grief workshops and activities as well as online is different for each person. It has no time limits and can involve resources for young children, teens and adults. many different feelings and emotions. The Community Support Gingerbread (www.gingerbread.org.uk) Team at DEBRA aims to offer an individualised support service to supports single parents. Services offered people living with EB and their families who are facing the end of life, include face-to-face friendship groups and an bereavement and grief. online bereavement forum. Emotional support Helping children cope with loss • We will provide emotional support – this could be by telephone, Child Bereavement UK through home visits or letters of condolence. (www.childbereavementuk.org) supports • If you wish, your community support manager can refer you to families and educates professionals when a baby or child dies or is dying, or when a child is healthcare teams, charities and other bereavement organisations facing bereavement. for specialist bereavement support, including counselling and support for siblings and extended family. Winston’s Wish (www.winstonswish.org.uk) offers support and guidance to bereaved children, Practical support their families and professionals. • Healthcare provision will usually be in place when a person is approaching the end of life. However, families or professionals can One-to-one and group support ask a DEBRA community support manager to help find services Cruse Bereavement Care (www.cruse.org.uk which are not currently funded by existing statutory services. For and www.crusescotland.org.uk) offers example, a DEBRA community support manager may be able to bereavement support and counselling in groups assist with locating specialised hospice care. or on a one-to-one basis, regardless of the • If requested, a community support manager can also provide length of time elapsed. assistance with arranging the funeral. Bereavement and cancer • Under some circumstances a support grant can also be given to Macmillan Cancer Support help with some costs when supporting a bereaved person or family. (www.macmillan.org.uk) supports people with cancer and their families, offering Remembering loved ones opportunities to share experiences and Plans are in progress to create a dedicated remembrance page on celebrate the life of your loved one. the DEBRA website. Here you will be able to write about your loved one – friends and family can visit whenever they want. The page will Finding help near you consist of two remembrance rooms, one for adults and one for Charity Choice (www.charitychoice.co.uk/ children and teenagers. charities/family/bereavement) provides a directory of charities, including those providing Contact us bereavement support. Counselling Directory If you would like to talk to someone about bereavement support, (www.counselling-directory.org.uk) is a or if you would simply like to find out more, please contact us on searchable database of qualified counsellors. 01344 771961 or email [email protected]. We will be glad to support you.

Useful resources: hospice care Hospice UK (www.hospiceuk.org) is the national charity for hospice care. Scottish Partnership for Palliative Care (www.palliativecarescotland.org.uk) gives information on palliative care services in Scotland. Together for Short Lives (www.togetherforshortlives.org.uk) supports all children with life-threatening and life-limiting conditions and all those who support and care for them. Children’s Hospice Association Scotland (www.chas.org.uk) provides vital hospice services for children and young people with life-shortening conditions.

DEBRA In Touch Summer 2015 17 Fundraising Get your company involved! Companies can support DEBRA though a wide range of activities, and we have a range of materials available to help you in your fundraising.

Charity of the Year There are many imaginative and innovative ways to provide Image credit: Urgo Medical. real tangible benefits to your company and people living with EB by making DEBRA your Charity of the Year. Payroll Giving Urgo Medical scores a hole in one for DEBRA If you are an employee and would like to sign up for payroll giving please contact your company’s payroll department A big thank you to the team at Urgo Medical for and ask for the relevant form. You will need our charity generously supporting DEBRA by encouraging name, address, charity number and our Give As You Earn delegates at the 2014 Wounds UK conference to registration number: play ‘Urgolf’ and putt a ball for charity on the mini golf course at their exhibition stand. Our address is DEBRA, 13 Wellington Business Park, Crowthorne, Berkshire, RG45 6LS. This inventive and original activity raised much needed funds for DEBRA – funds we’ve put Our Registered Charity Number in England and Wales towards purchasing air conditioning which will is 1084958 and in Scotland SC039654. make a huge difference to people living with EB.

Image credit: Urgo Medical. Our Give As You Earn registration number is In hot or humid weather the blistering and pain 11000001418. caused by EB can be exacerbated so these items As an employer, to set up a payroll giving scheme for your can become essential piece of equipment. workforce all you need to do is sign up with an approved Shafia, whose son Moin has Junctional EB, agency such as Charities Aid Foundation or Workplace explains what a difference this can make: Giving UK. Sponsorship The air conditioning provided by DEBRA is fantastic… Moin has it Corporate sponsorship is a fantastic way to support in his bedroom and uses it all year DEBRA – your company could sponsor an event, provide a venue, donate a prize for one of our gala events or help round. He gets so hot in bed because with advertising and/or printing costs. of all his dressings and the unit helps him to get some sleep. However you or your company would like to help, please contact us. Libby May ([email protected]), Thank you to all the team at Urgo Medical. DEBRA Corporate Partnerships Manager, would be delighted to hear from you.

Former trustee and lifelong SMILE DADDY, I’m dying. DEBRA supporter Robin Hood SMILE DADDY, If you would like to go to a DEBRA I’m dying. has released a book. Smile fundraising event such as Fight Night,

Daddy, I’m DyingI encourage youcharts to keep up the good work DEBRA his is doing. Your efforts are an inspiration and I know that Alex would be proud. I wish you all the best. a golf day or a Butterfly Ball, we will do journey to raiseSincerely money Bill Clinton to find a You have done so much over the years to raise funds for EB research and have my deepest admiration for your efforts. our best to assist although places may be cure for EB afterYou were hisAlex’s greatest championdaughter and Alex

I am sure she was very proud of your Image credit: Robin Hood. great love for her.

With all my best wishes. ROBIN HOOD limited. Visit www.debra.org.uk/events to was born with theGordon Brown condition in To describe Robin as a tireless campaigner for the DEBRA charity completely understates his contribution. 1989 and died Hisin efforts and2008. dedication to the cause has been nothing short of phenomenal. Simon Mackenzie-Smith former of DEBRA appeals council. browse events near you and email One man’s story The book can be bought at of slowly losing a child [email protected] or call www.smiledaddyimdying.co.uk ROBIN HOOD 01344 771961 to find out more. or in several book shops in Castle Douglas. Profits will go towards research into EB.

18 DEBRA In Touch Summer 2015 Section name in Retail here Click and Collect! We are excited to announce that we are trialling an online ‘click and collect’ service in the DEBRA charity shops at 162 Stratford Road, Shirley (B90 3BQ) and 23a High Street, Normanton (WF6 2AD). The items are available to buy online through eBay and the buyer collects their purchases from the shop. DEBRA eBay has also launched its box collection service for specialist items valued at £20 and above. Please check out our eBay site at www.stores.ebay.co.uk/DEBRA-charity-shop. Are you having a clear out? Please bring us your unwanted items!

Furniture, electrical goods, clothing, shoes, handbags, In the past year we left an astonishing bric-a-brac, books, CDs and DVDs can all help us raise 1.7 billion items of clothing unworn – that’s much needed funds, helping us support more people living with EB and fund research into EB and ultimately, a cure an average of 28 items for every man, for the condition. woman and child in Britain! A third of all unwanted clothes – 430,000 tons of them – end up in landfill when they could be reused or recycled To find your nearest DEBRA charity shop please visit according to Wrap, the waste reduction body. So why not our website at www.debra.org.uk or call the Hamilton give them a new lease of life and donate them to DEBRA? office on 01698 424210.

Sending your love on New shops! the wings of a butterfly

This spring DEBRA enjoyed another successful Butterfly Wish campaign. Supporters were asked to ‘send their love on the wings of a butterfly’. For a suggested minimum donation of £1 they could write something special on a butterfly wish card, which was then displayed in their local shop, helping to raise essential funds for DEBRA. The campaign raised over £3000 this year. Customers queued outside to be the first through Television personality and Dancing on Ice star the door to bag a bargain at the opening of the Daniel Whiston signed his very own butterfly wish, new DEBRA charity shop at Unit 4, Village Square, which displayed in DEBRA charity shops in the Bramhall, Stockport, SK7 1JJ. North West. We also opened a Furniture and Electrical shop at Meanwhile the DEBRA shop at 3/3a Park Lane 49/53 Queens Road in Watford (pictured). The new in Poynton shop specialises in selling good quality furniture displayed a and electrical items, and offers a FREE collection fantastic 839 service. For more information please call the shop butterfly wishes on 01923 804241. in the month of March. Just look at the fantastic window display To view more photographs from our shop (pictured) they openings please visit www.facebook.com/ made with the DEBRAretail. wishes. Well Follow @DEBRA_retail for more DEBRA done Poynton! charity shop photos, news and bargains.

DEBRA In Touch Summer 2015 19 Useful Numbers DEBRA Office Director of Healthcare, Membership and EB Community Support – Claire Mather Membership enquiries 01344 771961 Membership Manager – Hazel Ewens Membership Assistant (inc. holiday home bookings) – Sharon Hyde Charitable Activities Communications Officer (inc. In Touch) – Miranda Lloyd EB Community Support Team North of England, Wales, Scotland and NI Regional Manager – Sondra Butterworth 07920 231271 Scotland and the Far North Area Manager – Beth Davenport 07917 230105 South of England Regional Manager – Helen Weaver 07880 193118 South of England Area Manager – Miranda Hartley 07717 774553 South of England Area Manager – Sallie-Ann Nicol 07747 474454 Central England and Wales Area Manager – Zainib Hussain 07920 231270 Volunteering for DEBRA 01698 424210 Fundraising for DEBRA 01344 771961

Healthcare Children’s Nursing Service – Great Ormond Street Hospital 0207 829 7808 (out of hours service for patients registered at GOSH only: 0207 405 9200, ask for EB nurse on call) Lead EB Clinical Nurse Specialist – Jackie Denyer EB Clinical Nurse Specialists – Lesley Foster, Finola Sheehan, Angela Whelan Service Co-ordinator – Sonia Ama Children’s Nursing Service – Birmingham Children’s Hospital 0121 333 8224 (out of hours emergencies only: ask for the dermatologist on call stating that this is an EB child) EB Clinical Nurse Specialists – Lisa Burns, Dawn James, Emma Raybould, Victoria Warren Adult Nursing Service – St. Thomas’ Hospital 0207 188 6399 Lead EB Clinical Nurse Specialist – Jane Clapham (North) 07775 648472 EB Clinical Nurse Specialist – Pauline Graham-King (North) 07786 850683 EB Clinical Nurse Specialist – Chris Bloor (South) 07554 223358 EB Clinical Nurse Specialist – Annette Downe (South) 07786 850684 EB Clinical Nurse Specialist – Caroline MacKenzie (South) 07833 401838 Adult Nursing Service – Solihull Hospital 0121 4245232 EB Clinical Nurse Specialist – Tracy Adni 07846 986987 EB Clinical Nurse Specialist – Kal Begum 07966 801710 EB Clinical Nurse Specialist – Bryony Jay 07816341465 EB Clinical Nurse Specialist – Carol Knowles 07527 679679 Scottish Healthcare Team 0141 2118773 EB Clinical Nurse Specialist (adults) – Debbie Johnston 07772 628831 EB Clinical Nurse Specialist (paediatrics) – Sharon Fisher 0141 2019220

In an emergency call 999. Out of hours for urgent medical help contact NHS 111 or your GP. If they require further information about your condition they should be advised to speak to the on call dermatology registrar at your specialist centre for EB.

DEBRA, DEBRA House, 13 Wellington Business Park, Dukes Ride, Crowthorne, Berkshire, RG45 6LS. email: [email protected] web: www.debra.org.uk Follow us on Twitter @charityDEBRA Visit us on Facebook via www.facebook.com/DEBRAcharity Registered charity no. 1084958 (England & Wales) SC039654 (Scotland).