Hello!
My name is Tatyana, I'm frim Ukraine. My son has CESD. I would really appreciate if you share with me iinformation if the patients with CESD receive treatment with Kanyma in Germany.
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.
Tatyana
My name is Tatyana, I'm frim Ukraine. My son has CESD. I would really appreciate if you share with me iinformation if the patients with CESD receive treatment with Kanyma in Germany.
Nov 30, 2017
Tatyana
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.
Regards, Tanya
Dec 5, 2017