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Posts Tagged ‘gammainterferon’

My name is Gunnhild Lystad, I’m now 40 years old. In 2009 I was diagnosed with friedreich’s ataxia (FA). In 2011 I started my blog because I wanted to share my “insider” tips to others being a physiotherapist myself and living with this condition. In august 2013 I stared taking Imukin injections. In October I was certain about the positive effects I had and decided to share it on my blog. The years to follow more people started taking Imukin if they could find a doctor willing to prescribe it and if they could afford it. Two big “ifs”. Here I will sum up some of the feedback I’ve got from others taking Imukin. In the end of the document you’ll find more recent updates and finally my own update.

 

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Do you like what you’re reading? I love it!

Thanks to the research team at Akershus University Hospital in Oslo with clever doctor Wyller in charge and not least, thanks to amazing Emilie, the scientific article about Imukin and cardiomyopathy is now published. This is a case study so the research is done one person, but pretty promising right?

You can download the article here: Wyller et al_Imukine for cardiomyopathy in FRDA_Int J Cardiol 2016

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The response I got after my last blog post has been overwhelming. No doubt that the FA community is waiting for something positive to happen. I’ve had 1400 visitors on my blog since my last post from all over the world and I’ve gotten so many kind and encouraging words.

bilde-1I did actually consider not to tell you this story about my testing of Imukin. It is scary to be the messenger of hope when the outcome is so uncertain and I might end up being the messenger of false hope. Before I started taking Imukin I had to work this out in my own mind. “It might not have any effect, you might get very disappointed, can you handle that? Then what?” For my own sake it is very clear now that some hope is a billion times better than no hope! It is like my eyes have opened up a bit more and I see a bit further than to the tip of my nose. That’s why I choose to share my story with you at this early moment.

When you read my blog you must remember that I’m not a scientist myself. I know that gamma interferon(IFG) isn’t the cure that we all are waiting for. According to my conversation with Professor Testi, the cure lies years ahead of us still and it will probably be a drug with many different advanced components to repair the complexity of FA. I am 100% sure they will figure it out. I am so happy about all the brilliant minds working to find the cure for FA!

What I have understood about IFG is that it might have the ability to protect our cells and to increase and maintain the levels of frataxin. In theory that means that IFG might work as brakes on the degeneration, at least for a while. Let’s all hope that this is what they find as the research proceeds. If not, I bet they have learned a lot from putting IFG under the microscope that again will lead us closer to the cure.

Before I decided to start the treatment I learned that another person with FA already started taking IFG! I am in direct contact with him and I’m very excited. His name is Lucas, 29 years old from Argentina. He has been taking 100 micrograms of Imukin three times per week for a whole year now! His FARS scale has improved 10,5 points since before he started the treatment and he is also so happy about the difference. The changes he notices the most are that he has a better posture, which makes his breathing better and his speech easier. He also improved in strength. For instance it is easier for him to hold a glass compared to before.

Both Lucas and I are fascinated and thrilled with the changes that came with taking the Imukin injections. How long will it last? Will all FA-ers experience a difference? Does it have any side effects? There are so many questions left to answer. What our bodies actually are reacting to is up to the scientists to figure out. We are looking forward to the future research with excitement! If you are going to Philadelphia on Monday for The Sixth Annual Friedreich’s Ataxia Symposium you will hear Professor Testi talking about his research live. I’m looking forward to hear all the speeches on the Internet. I guess there will be live streams available?

My own words in arabic… how cool!

The president of the Babel family, Mr Gian Piero Sommaruga, contacted me after my last blog post to ask if it was ok if they translated my post to different languages. Of course it is! This is the Babel family: BabelFAmily is  non-profit organization headquartered in Spain (CIF: G-85711513). We are a worldwide group of volunteers that unite our skills to support the greater FA community of patients, doctors, researchers, scientists and associations in their mission to find treatments and a cure for Friedreich’s ataxia.” If you haven’t seen their web page yet you should check it out immediately.

Here is the web page: http://www.babelfamily.org/en/

Here is an interview they made with “my” professor: http://www.babelfamily.org/en/latestataxianews/876-interview-with-dr-roberto-testi

There are still so many thoughts I have about all this. I will try to break it down into smaller posts rather than writing one gigantic one. Also you should read the comments made by others on my latest post. We have some discussions there that might be interesting for others to read.

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