Happy New Year to one and all. I hope you all had a good, if locked-down festive season.
Thanks are due to the many people who have contributed to posts on AMN Easier. Talking about your practical experiences dealing with AMN is really invaluable to all men and women with our disease, especially to those recently diagnosed. If there's one thing that we can say for certain is that everyone's experience is different and unique. That's what makes them so valuable. With over 1,100 members, someone, somewhere will find that your experience mirrors their own.
So, let's hope for better things in 2021. The progress of bringing new drugs to market for patients has been permanently altered with Covid. The fact that we can get vaccines designed, tested and manufactured in less than a year shows this. And the science of CRISPR Cas 9 is accelerating all the time with the help of AI. Google Deep Mind's protein-folding achievement is a breakthrough moment. As patients, we can keep pushing politicians and companies to do more.
All the best for 2021.
Chris
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COwithAMN
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A Happy New Year to COwithAMN and all at AMN Easier from all at Kranal. Yes, the coronavirus vaccine developments have shown what the pharmaceutical industry is capable of, so let's hope they will advance their developments for genetic conditions too. There was a good programme on Netflix about CRISPR. Let's hope this will develop for the good of genetic conditions. Here's to 2021. 🍾🍹
Happy New Year Chris and thank you for all you do on here. Unfortunately I didn’t have a very good Christmas or New Year, some of it I can’t remember even. Broke my leg on the 15th Dec, ended up in hospital having surgery (don’t do anything by half) and catching COVID 19 on the ward. I have never been so frightened in my life. When I was coming out the other side talking to the nursing staff about the added drugs they were giving me I was told one tablet was high strength Vitamin D3. I told them it was something I had been taking for a number of years. Unlike a lot of the other people on the ward with covid, I didn’t have any infection on my lungs. They think it may be because of the D3. So guys, those of you taking this pat yourselves on the back, best idea you have ever had!
That's bad news to hear about your leg break and then Covid. I hope you are on the mend. I can empathise with you on the leg break as I did the same (neck of femur) in 2018. Recovering from major leg surgery when you have AMN is not straightforward!
Good that the D3 seemed to help the Covid recovery and a good recommendation I think.
You are a battle-hardened trooper and well done for being so cheerful!
Broke my femur completely in half. Have a metal rod from my knee to thigh. Been here three weeks, I’m being allowed to stand up tomorrow. Fingers crossed I can walk.
Sounds exactly like I had. Except my femur was in two or three bits. I had the metal rod like you - cheerfully called a "nail" also from knee to thigh. In my case, they got me up walking two days after the op. Good idea for mobility but a bad one for me as it turned out. Over the next few weeks, the nail slipped, broke the retaining pin near the knee, and has resulted in my right leg being shorter than my left.
Keep us posted on how you are doing. Leg breaks to be avoided when you have AMN! Good luck with it all.
OMG Chris that sounds awful. I have just had the consultant to see me and heard “nail” for the 1st time. He has agreed I can go home if I’m safe and can walk. Physio to continue at home. Just hoping it’s tomorrow or Wednesday
I started taking 10000 units of Vitamin D as part of my high antioxidant cocktail recommended by my consulting neuro. Dr Van Haren at Stanford has done a study with ALD in children and there is research involving MS as well. You can see Keith's presentation on youtube at ALDConnect.
Forgive me for liking your post but I'm stricken with awe of your ordeal! Thank you for sharing this and I wish you brighter and stunning days for you this New Year.
A friend of mine has had Covid since January 2020. Long Covid, it seems they call it. Every day is a fresh hell for him. Nothing medical science can do once they have prevented you from dying from it.
It takes some getting over, I can’t imagine what having it long term is like. Just had my observations done and my temperature is up yet again. As for the fatigue and upset tummy fun it isn’t
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Old friend, new enemy
Breathing/Nasal/Talking Issues
Has any female with AMN had kidney problems? I was diagnosed with end stage renal failure early this year. Came out of nowhere.
Chronic fatigue for ladies with AMN/ALD