<p>ESID SPRING MEETING PRAGUE, May 2004</p><p>Dear Ladies and Gentlemen,</p><p>It is a great honour for me to be here, especially my ancestors came from the Czech Republic.</p><p>Please excuse me. My English isn’t the best so far, so I have to read from my papers.</p><p>I want to speak a little bit about my experience as a patient, about the German support group named DSAI Deutsche Selbsthilfe Angeborene Immundefekte e. V. and about the subcutaneous treatment I receive.</p><p>Please let me briefly introduce myself: My name is Eva Soergel, I am 46 years old, and I am working as a regional group leader of DSAI and the IPOPI-contact person.</p><p>I am living in Nuremberg, Germany.</p><p>I am a patient with CVID, Common Variable Immunodeficieny, and I was diagnosted in the age of 39 years, after being sick with recurrent bacterial respiratory infections, chocking fits and chronic sinusitis since my second year of life. All year long I was coughing up green sputum. I had to get antibiotics often and as soon as somebody had a cold, I caught it from them.</p><p>Every illness needed many weeks to resolve even with antibiotics and it needed not much time to caught a new infection. Of course my parents visited many different doctors during my childhood, and I myself visited many doctors for help. But nobody ever had the idea to test my immuno- globulin levels. They thought: she is looking well, she cannot be really sick.</p><p>I got two BCG-vaccinations and had a bad reaction in both cases. But I had no positive reaction to the BCG-tests.</p><p>I was very sick after removing my wisdom-teeth with coughing blood, breathing problems, chronic diarrhea, stomach and bowel problems, and high fever. Finally a pneumologic doctor found the problem and I was diagnosted with CVID after suffering for 37 years. And they found out that I already developed bronchiectasies. My IgG-level was only 70, IgA and IgM not detectable.</p><p>A cheap blood test checking the immunoglobulin levels made from every primary doctor would have brought an earlier diagnosis for me. It would have avoid chronic lung disease. Therefore it is necessary that docs are sensibilized for the warning signs of primary immuno deficiencies, especially because experts think that there will be about 30.000 patients in Germany. And experts mean that 70 percent of them are still undiagnosted.</p><p>I got immunoglobulin shots, but only intramusculare, and so the levels don’t increase a lot. Then the doctors tried it with intravenious immunoglobulins, but the dose wasn’t high enough, so no great improvement with that either.</p><p>May, 6th - 2004 Page 1 of 4 Finally I found informations about my disorder on the Internet. I have learned that I have to get the immunoglobulin products all my life.</p><p>I found out the address from the DSAI, the German support group, which was founded in the year 1991 from two pairs of parents who had sick children.</p><p>At that time the DSAI has about 600 members.</p><p>From the DSAI I got the address of an Immune Deficiency Department two car hours away. It is a children hospital. Since then I am patient there.</p><p>I get more than the double dose of immunoglobulin now.</p><p>It was a hard fight to convince my primary care doctor to give me this treatment, but finally I got it. My primary care doctor said that the more IVIG he gave to me the more my body would need. And especially he was worrying about the high costs of IVIG.</p><p>After I had six months of treatment - my optimal treatment with IVIG - my health really improved. For the first time in years, I was really feeling better and had more energy. Of course I still had infections but they weren’t as severe.</p><p>The only problem was that I hated to lie for four hours every month in the doctors office and get the intravenious infusions.</p><p>The doctor had problems finding a vein. If I was coughing, the needle came out again and the doctor had to make a new needle stick. And sometimes I had violent shivers, back pain, or nausea.</p><p>We heard of a new form of treatment in Sweden, the subcutaneous infusions, without using your veins.</p><p>It took four more years for the support group to get the subcutaneous treatment established and approved in Germany. But since last year we have two products in Germany.</p><p>I administer my own subcutaneous treatments for three years now. I am infusing 30 mls twice a week, with a little pump and a needle that goes under my skin, into my stomach. My IgG-level is around 800 now. At first I got a Swedish product and now, since February 2004, I have a German product. During the infusions I can work on the computer. Or watching TV.</p><p>I never had such bad side effects again. Sometimes I have a swelling or redness at the needle site which is gone some hours later.</p><p>I am more independent from doctors.</p><p>If I am not feeling well, I can receive the subcut treatment at home on my couch, sitting with a warm heating pad on my feet and drinking a cup of warm tea.</p><p>I have not to spend a lot of time to come into the docs office and stay there.</p><p>May, 6th - 2004 Page 2 of 4 But the most important thing: I don’t need good veins for it.</p><p>I would never love to go back to the intravenious treatment again. In short: subcutaneous treatment means a better quality of life.</p><p>Unfortunately my health condition has presented new problems since last May. My doctor found out that I have generalized enlarged lymph nodes, a hepato-splenomegaly and suspect infiltrates in my lungs. I am feeling tired and without energy. Because malignant lymphoma is more often in CVID-patients, especially in women, the docs are worrying about it. So they did some invasive tests. But I have still no definitive results. I have learned that it is more difficult to find out whether it is lymphoma or not in immunodeficient patients. And I think there is still a lot of research to be done on these diseases to learn more about them.</p><p>Another problem is the pain in my joints and muscles which is getting worse. But there are no typical blood results or x-rax-findings, so the rheumatologist has no idea how to help.</p><p>Our patient group DSAI is working in public relations and working with politicans and the press. It is very important that there is an awareness of these unknown diseases. By the way: End of May there will be another Press Conference in Nuremberg. We are in contact to members of the European Parliament to improve the awareness, research and treatment. The first step – an European Awarenessday - was done in March.</p><p>We offers workshops for interested doctors and patients – and both, doctors and patients, are learning from each other. We have patient meetings in many different regions of Germany. It is so necessary to speak with other patients, to exchange experience and to see that there are others who have the same problems. To see that you aren’t alone.</p><p>We see us as an attorney for the patients informing public health authorities and insurance companies so that they can recognize the problems of the patients.</p><p>We have a German homepage in the Internet: The address is: www.dsai.de.</p><p>The first edition of our newspaper in English and German has recently finished.</p><p>We work together with the pharma industry searching new blood-donors.</p><p>My special interest is it to initiate more out-patient-departments especially for adults in Germany. We have children departments, but so far we have only special units for adults in Freiburg and Hannover. From Nuremberg we need over three car hours to come there.</p><p>Some adult patients still go into the children hospitals and have very long driving distances. If they need a hospital stay – there are no beds for adults.</p><p>Healthcare is very expensive now after the Health Reform in Germany and it is a hard job for the DSAI to get for all patients an optimal therapy. Often patients are underdosed, because immunoglobulin is very expensive or because the doctors don’t know about the importance of the optimal levels.</p><p>May, 6th - 2004 Page 3 of 4 The membership of the new countries in the European Union is a good opportunity to come in contact and to work together to improve the quality of life for the immunodefient patients.</p><p>Living with an Immunodeficiency isn’t easy but it should be worth-living.</p><p>Thank you again for the opportunity to be here in this wonderful city.</p><p>Eva Soergel DSAI Deutsche Selbsthilfe Angeborene Immundefekte e. V. Regional Group Leader Nuremberg e-mail: [email protected] Tel.: +49 (911) 50 13 84 Fax: +49 (911) 9 50 63 12</p><p>May, 6th - 2004 Page 4 of 4</p>