Oooh, dramatic subject!? 😉

Loosing my independence was the worst part of getting FA. I know many of you feel the same. You never really know how important independence is until you start loosing it. Right?

We were in Bejing, China, in 2010. I was only using walking sticks for support. We were at The Winter Palace and the Tinanmen Square (“Gate of Heavenly Peace”). Just getting to the entrance was really hard work. I ended up being so exhausted that I only made it just inside and then had to go back to the hotel… What a waste!!

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العربية (arabic)




I just entered into a new decade in life, and that has made me reflect on the decades that passed and the decades I have in front of me.

The thirties were a rollercoaster. Getting married at 31 and being diagnosed with friedreich’s ataxia two months later… I could write a book about my thirties. All the ups and downs and the lessons I’ve learned.

But I’m so over my thirties now and so ready for my forties. And you know what? I’ve started making plans for my 50th birthday in 10 years! I’m very excited about it cause I expect that we have many treatments for FA by then. I WILL dance and I WILL wear heels that day. (Are you with me Ilva? <3)

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Mitt navn, yrke, arbeidssted og profilbilder blir brukt av noen som lager falske profiler på ulike datingsider. Informasjonen er mest sannsynlig hentet fra denne bloggen 😦 Det kan tyde på at de er ute etter å lure menn for penger! Kommer du over profilen til Gunnhild Lystad, fysioterapeut, på noen datingsider så kan jeg garantere at dette er svindel. Individene som driver med denne svindelen har også opprettet en falsk epostadresse i mitt navn. Den falske adressen er mailto:gunnhild.romsdalsklinikken@gmail.com OBS: Dette er IKKE min adresse. 

Om du kommer over en slik profil i mitt navn, kan du være så snill å rapportere profilen til de som administrerer den aktuelle siden? Jeg setter stor pris på om dere også kan varsle meg om hvor dere har sett profilen eller om dere har fått en epost fra den falske epostadressen jeg har oppgitt over. 

Min epost er: mailto:realgunnhild@outlook.com

Takk for hjelpen


My name, profession, work place and profile photos are being abused in fraudulent activity on various dating sites. Apparently they are getting the info from this blog 😦 It seems that the goal is to scam men for money. If you come across a profile like this stating Gunnhild Lystad, fysioterapeut on any dating sites, I guarantee these are fake profiles. The criminals running this fraud have also created a fake email address using my information. The fake email address is gunnhild.romsdalsklinikken@gmail.com. This is NOT my address. 

If you come across a profile like this in my name could you please report the profile to the admins of the site? I would greatly appreciate it if you could also let me know where you found the profile or if you have received any emails from the email I noted above. 

You can email me at realgunnhild@outlook.com

Thanks so much for your assistance!

Are you in or out??

If we dont have enough people with FA willing to participate in studies, research will make a stop and it will take –  f o r e v e r – to find a cure! Who with FA feels like they have time to wait any longer then absolutely necessary?

Do you want a cure for FA?

If your answer is «Yes!!!!»: You must register here and be willing to participate in research Continue Reading »

In late september there is an international ataxia conference in Pisa, Italy. This is hosted by Ataxia UK, GoFar and FARA. I have seen posts on Instagram and Facebook asking for feedback from patients on what abilities we have lost that we would like to get back. Are there any symptoms we have that the researchers don’t know about and so on.  Good. Future research must not miss out on improvements because they are not aware of a symptom.

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This is the best novel you can find out there. This is why:

100 % of the income is being devoted to gene therapy research for Friedreich’s ataxia! The specific research project is aiming to find the best way to deliver the frataxin gene to the brain.

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Below I have collected some of the feedback I’ve got from people taking interferon gamma (Actimmune/Imukin) These improvements  can not be measured with the FARS scale, from what I can recall. I wanted to post this to show why the FARS scale alone should not be the only measure to decide if a drug has effect for FA or not.

We can not afford that these effects are not taken into consideration! Please find a way to measure this.

(If you have any more affects like these, please please please write me a comment so I can update the list. If we want changes, we need to say something)


pes cavus snu

Before Imukin

etter pes cavus 1

After 7-8 months on Imukin

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This morning I read a really scary and exciting story. A true story!

It’s about the newborn baby Frataxin who is destined to play an important role in keeping the nerve system safe when they grow up. To become an adult they have to travel the dark and dangerous roads to the safe city of Mitochondria. The distant lights from Mitochondria draws them closer and closer on their way to become the true heroes they are meant to be. In the darkness the Inspectors of Death are luring. Their mission is to watch the baby Frataxins and to tag them with Ubiquitin dust, the Kiss of Death. The Frataxin babies unlucky to have been tagged is immediately attacked by the Death Squad and transported  to the Hall of Proteasome where they are melted in the great fire. They will never become the Protectors of the nerves as they were meant to.

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Thank you for all the replies you have sent me so far. It is quite interesting to read, right? I hope we will keep getting many more replies. Comment below or send me an email: fafysio@extremeliving.no

Thank you so much dear translators for helping me spreading the word; Ahmet Sami Konca, Marisa Condurso de Nohara, Marilou Mertens, Dorival Ruiz, Amalia Maranhao and Michela Mogavero.

Also a big thank you to the amazing Gian Piero Sommaruga for coordinating translations and always for your great support and patience.

If you are not following the Babel Family group on Facebook than you really must go there and like the page https://www.facebook.com/groups/52801039038/

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Today I took another SARA score at my doctors and it is very exciting. In this score the best result is 0 – zero.

31.08 – scored 9,75 (right before my first injection)

26.10 – scored 7,2

25.01 – scored 5,1

Today I was able to take some steps  in tandem walk and stand for longer in tandem stance. It didn’t look pretty, that’s for sure, but I did it. Imukin and Thiamine seems to be a good match ❤

Many people are very curious about Thiamine. If you have tried it, do you mind leaving me a comment below? Your experience is important because it can help others. Thank you 🙂

Here is more about my own experience, dosages, link to reasearch and so on.

It’s been to long since I posted a picture of my cat, I know. Her she is 🙂