Meanwhile in Imukin-land

Just me again… Ranting about Imukin as usual 😛

So a pandemic just happened and making research on FA move even slower than before. Our patience have been tested in many ways this year, but if you have FA you are in hurry for real. No lockdown, one meter rule, face mask or antibac can keep us safe from the progressive force of FA.

I’m lucky to have Imukin while all this is going on,

My 6 years Imukin anniversary speech

The 27th of August 2013 is a Wednesday.

I have have gotten my very first package of Imukin from the pharmacy. I’ve hung up the phone call with doctor Harald for the last instructions. We are ready for the first shot.

I lie down on the sofa with pillows under my knee. I don’t know how this injection will feel like so I make sure I’m comfortable. My father, Morten and my mum is in the room. My mum is nervous. She will do the injection. As an experienced nurse she is never nervous before an injection, but it’s different with us kids. She always gets nervous treating us even now that we are not kids anymore.. She never shows it. She is the calmest person on the ouside as she fixes the syringe and desinfect my thigh.

Status – Imukin May 2019

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.

 

 

Un-dusting the definition of frustration

I was just scrolling through my older blog posts and discovered this one from 2015. This is probably a frustration many FA-ers are sharing with me right now both regarding Imukin and Intelence (etravirine).

Since etravirine became a topic in january is has fascinated me how much restitance it gets from a lot of people. The ones who argues the hardest against trying it do not even have FA. I get the idea of not wanting to harm your kid (or others), but even if you have seen FA up close you have no idea how grusom living with FA is. How it just day by day crush your future and destroys your body.

I absolutely welcome all sides of opinions in a discussion about a drug. They are very important, but if you are in a position to affect people whether they should or should not try a new drug for FA, you should be absolutely sure you know what you are talking about.

A big part of the discussion is the list of side effects reported for Intelence. Let me ask you this;

If there were a drug developed that had these side effects, listed as very common or most likely, would it even be approved? Hahaha no.

• loss of coordination (ataxia) in the arms and legs
• fatigue – energy deprivation and muscle loss
• vision impairment, hearing loss, and slurred speech
• aggressive scoliosis (curvature of the spine)
• diabetes mellitus (insulin – dependent, in most cases)
• serious heart conditions, including  hypertrophic cardiomyopathy and arrthymias

So here is the blog post from 2015:

The definition of frustration

frus·tra·tion

frəˈstrāSH(ə)n/

noun

noun: frustration

1. the feeling of being upset or annoyed, especially because of inability to change or achieve something.

When I hear doctors (and parents) refusing Imukin treatment to people with FA who wants to see if it can help it makes me laugh AND cry! It is both hilarious and devastating. Imukin (interferon gamma/ actimmune) might not help everybody, it won’t cure us but many people who have tried it experienced relief of symptoms. There are no words in the world that can justify what kind of relief that is!

How can the risk of flu-like symptoms be a reason not to try Imukin when FA is as terrible as it is? I know many decition makers are scared that there are more serious side effects to Imukin. There might be but it is not common. What kind of medicine does not have serious side effects listed in their description?

The most common side effects to Imukin are flu-like symptoms. What is that:

Flu:

• fever
• headache
• chills
• myalgia

I would take flu-like symptoms every day for the rest of my life as long as my FA symptoms gets better. That said, I hardly feel any flu-like symptoms from taking Imukin anymore. The body adjusts.

This is why I think doctors should let FA patients try Imukin:

Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder.

• loss of coordination (ataxia) in the arms and legs
• fatigue – energy deprivation and muscle loss
• vision impairment, hearing loss, and slurred speech
• aggressive scoliosis (curvature of the spine)
• diabetes mellitus (insulin – dependent, in most cases)
• a serious heart condition (enlarged heart – hypertrophic cardiomyopathy)

Again, I am not saying that Imukin is a cure but it might make symptoms improve. Please do something! Something is better than nothing!

Just sayin…

 

The most amazing tool to get more independence!

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!!

If you wish research for FA would move faster you should read this

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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)

Advarsel om svindel – Freud warning!

ADVARSEL OM SVINDEL!

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

FRAUD WARNING!

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

Don’t undermine these symptoms

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.

Why you need to get 10 copies of this book! (At least)

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.