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PC NEWS BRIEF Vol 12, No PC NEWS BRIEF Vol 12, No. 01 January 2017 ACTIVITY TRACKER & your time!” The statement is of my house to the recording studio course too sharp but it effectively where I work. It’s just twenty PC PAIN APP STUDY emphasizes the decision-making minutes but twice a day for several The fourth and final phase of the importance and is a good antidote days in a row makes it a bunch of Activity Tracker and PC Pain App to that “self-absolution” attitude we time! Study began December 28, 2016. are all inclined to. The 12 PCers and their 12 Set a realistic goal matched normal controls wear a If you would like to help and sup- Withings Activite Pop tracker 24 port PC project, but you are un- Time management can not work hours a day and answer two ques- sure that you can actually add one wonders. It is not enough to have tions every day about their PC more thing to your busy life, you a clear goal and be aware of your Pain: 1) What was the highest may find these short tips helpful. weekly routine. You also need to plantar pain in the last 24 hours? set a goal that you can achieve 2) What was the average plantar Establish Priorities and a reasonable deadline. Anoth- pain in the last 24 hours? Each er factor comes into play: not all phase lasted at least four weeks As a PCer, it took me several the parts of the day are the same. during each season of the year. years to go online and fill in the For example, after lunch – espe- The study began in Feb 2016 and forms for the IPCRR. This hap- cially if it is not a light one – you the final phase will finish during pened for various reasons but one are a little less productive because the end of Jan 2017. The purpose of them was most certainly that I of the process of digestion. At of this study is to develop validat- had not put it in my priority list with night, after a long day at work, it ed baseline data for use in future a clear decision. Clarity of vision is might be almost impossible to ac- clinical trials designed to reduce essential for achieving your goals. complish tasks that require a lot of pain for PC patients by gathering a thinking. record of daily pain and activity Manage time levels for patients with Pachy- A realistic goal and deadline onychia Congenita (PC) and nor- Once you have your well-defined should be fully compatible with mal controls matched by gender/ idea it is very important to ask your life. age/location during the four differ- yourself how you spend time. My ent seasons of the year. A big suggestion is to create a table – all Stay motivated thank you to our 24 participants you need is paper and a pencil – and remember to keep tracking. with the days of the week and It is easy to begin with enthusi- times and start writing down all the asm, but it is more difficult to ——————————————— activities of your weekly routine. maintain your initial commitment. If WHEN THERE IS A WILL THERE IS This is not a schedule you have to something goes wrong, try to iden- A WAY: TIME MANAGEMENT TIPS commit to, just a way to be aware tify your mistakes and to learn PAOLO COGNETTI, PC ADVOCATE of what exactly you do, how much from them so that you will be less Years ago, when I taught piano to time it takes and how much time is likely to make them again in the kids and they were not ready for available. By doing so you can future. It is very important to keep the lesson, I was often told “I did make a better use of your time. your energy up and to develop not have time to study!” My an- Focus on all those activities that patterns of positive thinking. Don’t swer was inevitably, “This is not can be downsized or removed and panic or worry. Panic will cause true, we all have 24 hours — you, accomplished more effectively. loss of concentration, poor perfor- me, and anybody else; it is all For example, I basically thought mance and will encourage nega- about how you choose to spend about this article while driving from tive thoughts. You will succeed. 2386 East Heritage Way, Ste B, Salt Lake City, UT 84109 · www.pachyonychia.org · 877-628-7300 · [email protected] Page 2 PC News Brief January 2017 | Vol 12, No. 01 [email protected] and we can are poised to forever change the ——————————————— add it to the PC Wiki. lives of current and future PCers… GOALS After the advocate training in Edin- 4) I noticed in the location and PC Project is VERY excited to re- burgh, we received a lot of enthu- demographic charts on PC's port that Mary Schwartz has been website that there are 5 people recruited to have an influential role siastic emails from patients with in shaping the clinical trial end- plans, ideas and goals. They were in Italy genetically confirmed points for a novel treatment de- all awesome. We have asked a with PC. If possible, I would like signed to help improve function, few of them to write an article. to be put in touch with them. mobility, and activity for PCers. PAOLO COGNETTI was the first. There are a few ways to get in As part of this, Mary has recently touch with others in your country learned from one of the world’s Wasn’t his article great and some- or state. One way is to post on the leading rare disease experts that thing we all need? Paolo had sent the U.S. Food and Drug Admin- Facebook PC Patient Chat Group. an email with a list of things he istration (FDA) has strongly en- Another way, after you have done would like to do first. He said he couraged rare disease patient ad- genetic testing, you can email PC was taking one step at a time. He vocacy groups to collect specific Project and give us written permis- is starting with the first one. He set information on how a disease im- sion to release what contact infor- pacts patients’ lives. a date to meet with his mom and mation you’d like to release such help her complete the forms. As as your name and email address. Here’s the exciting part: soon as he finishes step one, he PC Project and PCers have the Then tell us who you want it re- will move on to step two and set opportunity to be the FIRST pa- leased to e.g. those with PC in a another deadline. tient group in the world that col- certain country or state and you lects this data in the manner that can even specify only those with a the FDA has recommended. 1) Have my mother fill in the IP- certain PC gene. You can include CRR forms. an introductory message you’d like WE NEED YOUR HELP: Do you have other family mem- us to send. We will then email ENROLL NOW. bers that are not in the registry? your info and message to those Can you help them get enrolled? 1. Click the link below and enter you wanted. Hopefully, someone ONE (1) specific way you feel PC also wants to be in touch and will 2) Share my story impacts your activity, mobility, and respond to your email. We love having new stories on the function THE MOST. You will track this same activity, mobility, or PC Website to share. Email in- 5) Translate the IPCRR in Italian. function over the next 28 days. [email protected] your story I may need some help from a with photos. Also, you can share doctor. You may choose one of the exam- your story with your family, friends Let us know if there are certain ples listed or list anything that is your personal choice in the 'other' and colleagues. parts of the website you would like field. to help translate. 3) Do and share with other Ital- While we know that overall pain is ians the procedures to get a We would love to hear about your percent disability and the disa- the problem for those with PC, the goals. purpose of this survey is not to bled parking sticker. rate pain, but to identify the impact Have you had success getting dis- ——————————————— pain has on your life -- what you ability parking or disability in your QUEST FOR A TREATMENT cannot do because of PC and country or state? Write up how Calling All PCers… would do if you did not have PC. and what you did, send it to in- With the help of 100 PCers….for registry.pachyonychia.org/s3/ 28 days, one time per day…we PROexamples 2386 E Heritage Way, Ste B, PO Box 9010, Salt Lake City, UT 84109-0100· www.pachyonychia.org · Phone 877-628-7300 · Email: [email protected] PC News Brief January 2017 | Vol 12, No. 01 Page 3 2. Once #1 has been completed, tion equipment to tent pegs. I also games at its international campus you will receive an email with a have K16 genotype which I have in Valencia. link and instructions to download unfortunately passed onto Tim. At an 'app' to your phone to rate daily least I am able to relate to the diffi- Winner of both Italian and interna- how your chosen activity, mobility, culties he faces.
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