Wolfram Syndrome - My Story

Рет қаралды 2,432

Күн бұрын

This video is to help spread awareness about Wolfram Syndrome. Please watch it and possibly learn something new, share it with others to spread the word.
Look at these links for more information.
ghr.nlm.nih.go...
thesnowfoundati...
rarediseases.i...

Пікірлер: 22

@TheBigChad Жыл бұрын

Someone close to me and my family just got diagnosed with this and it had me really sad, but seeing your video has lifted my spirits a little seeing how vibrant you are. Please don’t ever lose that great attitude because it helps other people

@shehnazmufti7740 3 жыл бұрын

Hi Emily! I really like your video, great job, I have a daughter who is 26 years old and has wolfram syndrome. Sha has very low vision and no control of the bladder, she can walk with Walker or with holding somebody's hand. She doesn't have confidence to walk alone. She has no problem with hearing or diabetes, Thank God . Please make more videos and share your experiences, it will be so helpful for the people who are on the same boat. Thanks again and have a healthy life.

@addieaa560 4 жыл бұрын

Amazing video! I saw this on Nicky’s account and I had never heard of the syndrome so I watched. That was really brave for you to tell your story for all too watch. I hope everything goes as you wish ❤️

@skorned6162 3 жыл бұрын

I have Wolfram syndrome and this is the first time I thought to look on KZbin

@billygillespie4682 Жыл бұрын

I lost two sisters and a brother from this disease, I watched them going through this when I was in my 20 s to 30s. Sisters died in their 20s brother died in his 30s. This was in the 80s and 90s they were the only case in Northern Ireland. I am now aged 68, I have a lot of experience of the disease, I hope they find some way to control this disease it is devastating, I wish anyone who has it finds a cure.

@pavelstrokin7783 Жыл бұрын

Здравствуйте у вас тоже вольфрам?

@alisarigul7735 4 ай бұрын

Hallo ich kann leider nicht so gut Englisch aber hoffe du kannst es übersetzen, meine Schwägerin leidet unter dieser Krankheit und hat Symtome Diabetes Typ 1 schon als Kindesalter, Seh-und Hörprobleme immer wie mehr und ist bereits 29 Jahre Alt, giebt es irgendwie Medikamente auf Lebensverlängernde möglichkeiten? Weis du vieleicht etwas darüber? Vielen lieben Dank für dein Fedback😊😊😊😊😊😊

@rehabalsaleh166 3 жыл бұрын

Thank you for sharing this with us Emily! I'm a molecular biology and genetics student. I hope I can do sth for people like you in the future.

@judithporro7474 4 жыл бұрын

So very proud of you Emily!! You are a beautiful young woman!!

@jaileal8806 Жыл бұрын

Thanks Emily. My nephew has Wolfram and is about your age. It's great to hear about Wolfram from your perspective and I wish you all the best in your medical studies. As a medic myself, I was unaware of Wolfram until it affected a family member so the more I can learn about it from a persons perspective the better. I

@danieladelgado798 4 жыл бұрын

Love it!!! Emily , really good explanation, hope it inspires many more to become aware of this syndrome.

@christianm4129 4 жыл бұрын

Great video em, god bless🙏

@oualid2871 2 жыл бұрын

Very interesting video , thank you so much, so brave 🌹

@user-bt7gq4fc1u 2 жыл бұрын

Hi Emily! I am Korean, 26 years old man, and I am Wolfram syndrome patient just like you. I didn't understand everything you said in the video because I'm not goot at english, but I'll try to translate it even if it takes time.

@luhannagarcia1691 4 жыл бұрын

Awesome video

@chucktheperson1063 2 жыл бұрын

Wolfram is indeed rare but can be very debilitating. My stepdaughter has Wolfram from age 20 and is now 50 years old. Most everything is under control except her memory, which gets worse as time passes. Sad to watch her going down hill at what I consider a young age. (I'm 73) Modern medicine has come a long way but has an even longer way to go.