This morning I woke up to an incredible message of hope! Not a bad way to start a new day?! On my phone there was a message from a happy mother sharing some good news about her daughter Emilie. Emilie is a great inspiration to me in so many ways. She is a musician and is releasing her first single later this summer. We are so excited about this. It is called “Unbreakable” and I’ve been lucky enough to listen to some of it already. It is so good!! π She is 18 years old and has FA.
Beauty, musician and warrior β€
Emilie is suffering from severe cardiomyopathy and has been for many years. She has been in and out of hospitals. You can imagine that her doctors had many dilemmas when she last year asked about trying Imukin… No one else with FA and cardiomyopathy is taking Imukin, as far as I know. Her cardiologist made thorough research. After many discussions they decided that Emilie would start injections of Imukin. She started last October and the first dose was 10 mcg and injected at the hospital to be able to monitor her for 24 hours. It all went well. Unfortunately she’s had a bit of a hard time adjusting to the medication and she has been having more side effects than noticable effects for a long time. Side effects has been fatigue, muscle aches, nausea, headaches, depression and sleepiness. Hard to stay motivated feeling like this, but she kept going.
Now look at what her mother wrote me:
Emilie has been on the verge of giving up on the Imukin injections altogether, but since about one week ago something changed. The experienced side effects faded and the effects started showing. She has grown a lot stronger (and she was already very strong), she finds it easier to stand up, her movements are more controlled and generally everything seems a lot better.
Everything is very promising and more people could possibly also benefit from Imukin, maybe even those with cardiomyopathy.
Great news or what? π
If you have any questions please write them below in the comments field. Emilie will help me with the replies π
I am so happy for you Emilie! Very good news!
I am very happy to receive this news dear friend !!!!! As you know, Matheus has a defibrillator pacemaker and I’m thrilled about it …… wanted very much, he had a chance to use the IMMUKIN …. ……… because I know that your heart would strengthen !!!!! I cheer a lot for that to happen, and that has a chance to improve their lot !!!! He is a passionate person !! !!!!!!!! May God open doors for Matheus use IMMUKIN because we do not afford it !!!!! Bjkas dear friend !!!!!
Thank you for sharing this article about my little sister and about FA. Most people doesn’t even known it exits. Thank you so much!!
Your sister is a star! Happy to call her my friend π
Hello! I am so thrilled to hear such good news! I hope things get better and better soon for all of us! I am writing to you from Greece,my husband has FA and suffers from cardiomyopathy-atrial fibrilosis and I would like to ask you if Imukin is helping also in the coordination and stability of movements as well as the heart. I read above that Emily is more stable and stronger and I just can’t believe it! I am so happyyyyyyy! β€
Hello Greece! π Yes, absolutely. You should read this blog post that I wrote after one year on Imukin: https://fafysio.wordpress.com/2014/08/27/one-year-anniversary/
And this: https://fafysio.wordpress.com/2014/08/21/amazing-ilva/
π
G
My compliments to Emilie for resisting so long to so many side effects.related to Imukin injections. I’m just wondering if she never tried or managed to control them taking paracetamol or other painkillers before every injection.
Hi GPπ She takes paracetamol with every injection. It took some side effects away but not all. Of the six people here in Norway she has had the most side effects. A lot of huge things have been going on in her body with the heart walls growing thinner and all.. Some how it feels logic that her body would have some reactions to it going on. But that is just a theory I have.
Do you think it helped her other symptoms of FA, other than the cardiomyopathy? I have FA, my heart is fine but I am in a wheelchair and have quite severe scholiosis. Thanks for sharing.
Hi Samantha π It helps for many other symptoms. You should read this blog post that I wrote after one year on Imukin: https://fafysio.wordpress.com/2014/08/27/one-year-anniversary/
And this: https://fafysio.wordpress.com/2014/08/21/amazing-ilva/
π
G
Hello,
my beloved nephew as well as having many symptoms (scoliosis, heart, muscles, balance, short tendon, heart disease …) for about a year the AF touched the optic nerve and see evil. I am very afraid for his views, you think the Immukin could improve the optic nerve and improve eyesight?
Hi Pasquale,
In theory it would help, but nobody knows yet. The research just started. I did not want to wait for the research to finish so I started on Imukin two years ago. If you have the opportunity to get your nephiew started on Imukin that’s what I would do. Then at least you have tried something right?
Good luck!!
G
Hello Gunnhild my name is Chiara, Iβm an Italian girl of 30, I discovered your blog a few months ago and I love your post! You transmit all your energy and your enthusiasm! My boyfriend has the FA for fifteen years (he discovered when he was 30 now has 45) and each day he finds the strength to go to college and follow all the lessons, lack four examinations to graduate and despite two months ago was hospitalized for a serious heart problem has now begun to study and he is very good.This year I learned a lot from him and the most important was to never lose the desire to try to invest the whole βenergy in the things that I want. The FA has not prevented him from returning to the sea and swim after 10years π We hope every day that we can find a cure but we live every moment of our days using all that life gives us. I wait for your next post! A big kissπ Chiara
Thank you for your sweet comment Chiara and thanks for sharing your story π I admire your boyfriends strength and spirit! And you for sticking around. Your love is strong! β€
Hugs to you both!
G
sounds promising, how much does imukin cost ?
About 100 norwegian kroner (NOK) for 100 micrograms. So expencive!
Hi happy to hear great news hoping for you to get best results if you can help answer some questions for me please can you please give me more update like has it been any improvements since you last posted. my nephew has friedreich ataxia he is living in Ireland and not taking no medication can you please let me know would you recommend for what to do hoping to hear back from you soon thanks for posting xxx
Hi Tom, My latest update was during easter. No changes since then π Two more young Norwegian patients just started the treatment since then though. I recommend this treatment with all my heart for your nephew! If you look on the right side of my blog you’ll find a cathegory menu. There you can choose “Imukin” and you will be able to see all my updates on the matter.
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