I am aware of the responsibility I have writing about Imukin in my blog. It is very expensive, it is not available in all countries, it is so early in the research process, we don’t know if there will be any long term side effects… and so on. But I feel really strong about sharing things that gives hope. Hope is so valuable cause I know how it is to feel hopeless.
So Ilva, Therese and IÂ decided we want to show you Ilvas feet…
In December she had pes cavus and hammer toe on each foot.
This picture is from 2010. So you can add hammer toes to the picture to make it resembling how her feet looked in December 2013.
In January she started on Imukin. This is her feet yesterday!
Where did the pes cavus and hammer toes go?
Is this normal progression in FA? Did anyone else experience that pes cavus and hammer toes just disappear? Or is it Imukin?? Worth mentioning is that Ilva had flexion contractures in her fingers prior to Imukin. She can now fully extend her fingers. Unfortunately we don’t have pictures to show you of the hands. As Therese said: “We didn’t expect these things to improve so we didn’t think to take a before – picture.” 🙂
nossa…………………..esperamos que este medicamento seja utilizado para a melhora da ataxia friederich…………..
Can someone donate to my son imukim???
sorry but I’m desperate!!
Want better quality of life for Matthew, but I have conditions to buy!
I know, FA is a desperaste situation for all of us 😦 What country are you from? I know that Imukin in Argentina is 1/3 the cost compared to Europe.
You give us help and hope. Priceless!
Good to hear Amalia 🙂
Thanks for all.i want to ask you how do you feel after injection are you walking alone after take do you have balance because i dont have i walk but whith some help and whith walker ?
Date: Wed, 21 May 2014 10:05:28 +0000 To: endi_boy4@live.com
Hi again Endrit. Now I don’t feel so much after the injections anymore. Maybe 1,5 hours after I can start getting some chills. I take a paracetamole after injection and then I don’t feel anything. I do the injections at night and I usually sleep all night. In the beginning when I first started taking injections I felt like I was getting a flu the next day. I coud have fever, some headaches, chills, feel tired and have som muscle aches. I know that Ilva and my sister also could experience some dizzyness. For all three of us the side effects have lessend during the first month. It is like the body needs to get used to it.
I still walk. I prefer to use a walking stick or two sometimes. I can walk without too but I don’t like how I look then. It is not a pretty sight… 😛 With walking sticks I can concentrate on walking more right.
Wow, this just totally brightened my day. I thought the foot situation was permanent! 🙂
I thought so to! :):)
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