Dear Gabi, thank you very much for your reply! You do understand how important it is for a patient and his family to get as much information about this disease as possible. We were the first one in our country who got the confirmation of CESD and it's hard to realize your baby has such a rare disease... BUT we do believe in best and pray for him each day. I do wish you all the best also, please be strong and patient! Could you please give me more information from your experience: - at what age were you diagnosed? - when did the first symptoms appear? - do you receive Kanuma on free of charge basis every two weeks? It's very hard to get Kanuma in our country due to high cost of the drugs as we still do not have insurance medicine. But we are doing our best to get it.
I was born with it. My Mother dont want me and i was for her blamable. As Child i was every tiered, and i was always hungry. I hadn`t not Energy as the same age. And I had diarrhea and stomach pain a lot of Days in my Life. My Mother don´t Interested. So I was 18 Jears old, im looking for Doctors to can help me... But i find it with 41 Jears. I wheight loss. They are right it is important to know what to do... My experience? Oh, many... I was in Study of Kanuma. I have nothing to lose.It was my Chance. Without Kanuma i was death in 2015. The Doctor of Study said Iam the oldest of the world with this disease..Oh jes, Kanuma is very expensive. Jes my receive is on free and my Dosis is 40mg every two weeks. I have a "Broviac- Hickmann"catheter in the chest. A Port goes not because the needles isn´t nickel free... Oh my God...i´m sitting here and write to my CESD...;) And you understand my bad english...;)) I m looking for my eat. Duck is better as chicken, Beef better than pig. And glutenfree is good as "evening bread". And in the morning müsli and flakes
Can you look in Ukraine for Helps Organization in the next Town? Or write To Uniklinik Mainz... I know, they can help... I must looking... I´LL write you ... I`LL be strong and pray for your son. Whats his name?we are in Contakt
Dear Gabi, thank you so much for your letters, it's very important for us to know as much as possible to be able to help our son. Today we made elastography and found out that my son has the 1st stage of fibrosis. We are very scared... My son's name is Vanya. Yes, our diagnosis is confirmed, we made genetic test. Unfortunatelly though we received our diagnosis in 2016 till now we do not receive Kanuma... It's very hard to receive such expensive cure in our country though we still try. But we are looking for any other opportunity to receive treatment with Kanuma and we are ready for everything.
Gabi, could you please give me more details on your diet. I'm suprised that duck is better than chicken. We give my son chicken and rabbit meat only... Duck is a kind of fat meat. What about friuts and vegetables allowed? You wrote that you eat lot of bananas but we were forbidden to eat them because of lots of sugars in them which transfer in cholesterol also... We eat lot of beans, a bit fruits, berries mostly. I make him salads with different kinds of cabbage, cucumber, tomatoes. In the morning - oatmeal. No yolk, protein only. What about milk products?
P.S. here is my e-mail address (email@example.com), you can write me here.
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