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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.

This book is the perfect gift to a friend, to a sister, to a father, to a neighbour, to a co-worker, to yourself, to everybody… You’ll need at least 10 copies.

If you don’t speak English or Spanish don’t worry. The book is beautiful. It will look so nice on your coffee table. Trust me, you’ll need it just for decoration ❤

Buy the english pocket book HERE

Buy the spanish pocket book HERE

Buy the english kindle version HERE

Buy the spanish kindle version HERE

“Marie Schlau is a young girl whose mind is filled with dreams and plans for the future. She’s just like other girls, but for one small detail: she suffers from Friedreich’s ataxia, a highly debilitating neurogenerative disease which limits her movements” This is how the book is introduced, and I promise you a powerful story.

The pseudonym A.F. BABEL represents the 17 authors of this collective novel: María Blasco (Spain), Jamie Leigh Hansen (USA), Diego Plaza (Spain), Eva Plaza (Spain), Rebecca Stant (Australia), Pilar A. Tolosana (Spain), Marguerite Black (South Africa), M. Luz G. Casas (Spain), María Pino Brumberg (Spain), Ramón Roldán (Spain), Nicola Batty (UK), Susan A. Carter (USA), Fátima D´Oliveira (Portugal), Kristina Zarrantz (Spain), Inma Priego (Spain), Sarah Allen (UK), Claudia Parada (Mexico). 13 of the 17 authors suffer from FA. Is cleverness a common side effect from FA? Seems to be 😛

Thank you all for creating this amazing book. Thank you to all the talented writers, translators, BabelFamily and Asogaf. We love you ❤

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I am sure you remember the blog post I wrote about Emilie in Cardiomyopathy and Imukin – promising news!

Today is the release of her first single Unbreakable! I downloaded it on iTunes this morning and I’ve kept listening to it over and over. Living with friedreich’s ataxia is extreme… That is why I called my blog Extreme Living. I cannot imagine how it is like growing up with this monster, as FA really is… It takes a lot of strength that is for sure. You can really feel the strength behind this song!

emilie mimmi austad andersen unbreakable imukin

Emilie is now on 150 micrograms of Imukin. She feels stronger and she has started to excercise. She has always been very strong but now she is doing pull-ups! Early this summer she was at a concert and she tells me that for the last hour she was standing the whole time singing and dancing!

As you remember from my last post, Emilie has quite severe cardiomyopathy. Today she tells me that the heart markers keeps improving! How is that for amazing news!! ❤ ❤ ❤

She can still be nauseous and have a headache as a reaction to the drug, but she is not as tired as she felt in the beginning of the treatment

You should really download her single!  It is available all around the world on iTunes and Spotify. You’ll find it here:

iTunes:https://itunes.apple.com/no/album/unbreakable-single/id1027446403

Spotify: https://open.spotify.com/album/1rX98uly17AK2ej9YiEjYB

Emilie is one of the two vocals you can hear, she wrote the lyrics and has pretty much had the creative control over the entire production.

Emilie, you inspire me! Thank you for making this song and for sharing your story with us! ❤

Unbreakable

By Emilie Mimmi Austad Andersen

 

When it comes down to it

I must admit

I’ve been through a lot

But I never gave up

They tried to knock me down

But I am stronger than they’ve ever known 

 

Now I don’t care at all

Now I’m picking up the pieces

And I’m moving on

I’ve cried so many tears

But I’m over it

I’m unbreakable x2

Yeah, I’m unbreakable

 

They enjoyed the view of me laying down

Breaking into pieces

Screaming for help

My scars and bruises have healed

I’m getting up

With a smile on my face and it won’t fade

 

Now I don’t care at all

Now I’m picking up the pieces

And I’m moving on

I’ve cried so many tears

But I’m over it

I’m unbreakable x2

Yeah, I’m unbreakable

 

Never ever happen again x2

 

Cuz I made it through

And I’m standing here

With my head up high

 

But now I am raising 

You are falling

Cuz I made it through

And I’m standing here

With my head up high

 

I’ve cried so many tears

But I’m over it

 

I’m unbreakable x2

Yeah, I’m unbreakable x2

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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!! 🙂 She is 18 years old and has FA.

emilie11225820_10153174725787211_1540288372_nBeauty, musician and warrior ❤

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 was just on her 6 month follow up with her cardiologist and we have some good feedback.

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.

Her heart markers are a lot better. One of them, pBNP, is now completely normal and Troponin T is almost normal. Both of these markers used to be “sky high” on Emilie. They have analyzed her ultrasound images from before starting Imukin with the images taken after 3 months and now after 6 months. The experts are convinced that her heart function has improved, both the systolic function and the diastolic function. In addition they notice that the walls of her heart have slowly grown thinner.
Emilie is about to increase her dosage to 150 mcg now so it will be very exciting to see if the positive trend continues. We are also very excited to see if her scoliosis has improved. She is going to a back clinic at the beginning of June.

Everything is very promising and more people could possibly also benefit from Imukin, maybe even those with cardiomyopathy.

Great news or what? 🙂

If you have any questions please write them below in the comments field. Emilie will help me with the replies 🙂 wmiliw11215906_10153174725867211_445602961_n

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Exactly one year ago I took my first injection of Imukin and my life changed fundamentally. I thought about it for a long time before I wrote about my testing. I really didn’t want to be the messenger of false hope. When the improvements kept coming I decided to share my story. The feedback from all over the world has been almost only positive allhough I was actually accused by someone to be paid by the pharmaceutical company to do Imukin marketing…! I thought it was funny, but no I am not. 🙂

The 27th of August 2013 we decided to try Imukin for three months. If it had no effects or if it had some bothersome side effects I would stop there. I felt the change immediately. I was 100% sure that it was placebo. I said to my doctors “If this is placebo then I really love placebo!” I loved the increased energy and how it got easier to speak. If it was placebo I sure was going to enjoy it as long as it lasted. Well, it has lasted for one year now! I am therefore certain that Imukin causes my improvements. My dosage is now 200 micrograms and I will keep taking it as long as it keeps giving me this great effect.

bilde(3)

The Norwegian government actually refunded 90% of the expenses of Imukin. I know many of you are wondering about this. We are so fortunate to have a fantastic public health care system here.

Yesterday I made this form trying to write down the dosage changes I have done, what side effects and effects I’ve had. Click the link below if you want to read it. I really look forward for the next year to come. The Imukin research will be published soon and also there is so much more exciting research coming up. The era of “there is no cure for FA” is soon over. I can feel it, it many ways! 🙂

Imukin dosage, side effects and effects

 

 

 

 

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Put your paw in mine…

The ultimate experience for a true cat person ❤ ❤ ❤

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bilde 2(1)

bilde 3 so happy!!!!

 

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It is fascinating how I can stand so balanced while I´m cooking, without any support! I used to be too tired to stand like this and needed to have a chair to sit on most of the time. Also my back used to start aching and get very tired when I stood only for a short while. Not to forget how the knees used to hurt from being locked into hyper extension and how the arch of my feet kind of collapsed, sort of couldn’t hold my body weight… Something is obviously making me more stable.

bilde 2I went straight from work, to the gym to cooking today. I like the improved G.

So…

Is it placebo that has lasted for five months? Can FA spontaneously improve? Is Imukin doing this to my body? My guess is the latter. May it last! May it last! May it last! May it last!

bilde 1Yes, it was really good! 🙂

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It´s winter, no doubt about that. Such a cold and lovely sunday it has been. A good opportunity to play in the snow 🙂

bilde 1

bilde 2 bilde 3 bilde 4

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