Into the Light - The FSH Society's journey to solve FSH muscular dystrophy

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Once considered ultra-rare, FSH muscular dystrophy is thought to affect one in 8,000 individuals, or nearly one million men, women, and children around the world. The FSH Society, a patient-driven nonprofit, has almost single-handedly launched a world-wide network of patients, scientists, and advocates whose efforts have led to the discovery of the genetic cause of FSHD and brought patients out of the darkness into the light. For more information, visit www.fshsociety.org

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2 окт 2024

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Комментарии : 34

@rickysneaks7424 5 месяцев назад

I've had LGMD since high-school. I'm 41 now, and still walking. I get to participate in about 10% of life. I think what hurts the most are people. They can't comprehend the struggle or the pain it causes just to exist. It didn't take me long to realize that it wasn't me that needed to accept my condition, it was the people around me. I chose myself to never quit, while others around me urged me to stop. For anyone struggling with any form of disease, don't look to others to find hope. Hope exists only in yourself. People will let you down and not think twice. If you want something bad enough, you'll find a way to get it. Friends, acquaintances, and even family will tell you to stop. But, you have to fight. Fight for every inch and every muscle. There will be pain. There will be heartache. But, at the end of the day, there will be you. Then you can ask yourself, was it worth it? You will be loved. I can promise you that.

@madelynmilsark5750 7 лет назад

Love you Sarah!

@Crom-D 9 месяцев назад

I was diagnosed in April of 2021 and I've been deteriorating rapidly since. I can't enjoy activities with my 3 year old son because I get tired within minutes. Can't raise my arms..pinched nerves in my neck..l'm embarrassed to take my shirt off because I have a flat chest and a bloated stomach. My spine gets more twisted every year..all of my muscles in my arms and legs are like jello it's sick. I grew up skateboarding and I can't even do that anymore and I'm not even 35 years old. But I was in the best physical shape then out of nowhere BOOM! It just stripped me of most of the muscles I need the most. I had to quit my career of 13 year's building recreational vehicles .. 'm not looking forward to the future with this. But I'm trying to enjoy life the best I can

@danielebrparish4271 5 месяцев назад

I was diagnosed in 1984. I had to leave my profession as a diesel engine mechanic and find a another profession. I knew college would be the best chance I would have to get into a field that wouldn't require me to use muscles. I never was a good student and only knew that I didn't want to be a teacher. After a few tries I discovered a love of accounting and earned a degree in that field. In my last semester the univeristies job center met with all the graduating seniors in business and announced that they couldn't find anyone willing to interview any of us because there were no jobs available in the state. 30 years later I laugh at them when they call asking for donations. I'm getting by so far. I'm fortunate to have many siblings but they really can't do much for me. As long as I have people to talk to I'll be alright. I'm losing the use of some of my fingers so I'll have to find another occupation.

@logicalpaheliyaninhindi1350 10 месяцев назад

10 years with FSHD for me.. life is getting harder and harder, Now I can't hold anything, I Fall almost every month and injured myself badly. When I walk , I feel like walking on the Rope,

@artbypieterpieterse5691 4 года назад

I have it as well ..we are strong in will ..and we dont give up

@mikeh4158 5 лет назад

I am one who at age 42 who has been living with FSHD for over 10 years. Life can be a struggle day to day living in pain or such as something so small like getting up from the sitting position or climbing a set of stairs is a struggle everyday. Here In Canada winters scare me because one slip and fallen down is a challenge for me to get back up onto me feet as my legs are to weak on their own to get me back up. I pray one day there will be a cure.

@williamjones573 Год назад

Have you started falling yet?

@mikeh4158 Год назад

@@williamjones573 Hear and there when my feet get caught on something. I find I do lose my balance a lot.

@williamjones573 Год назад

@@mikeh4158 Buy Scholl sports soles, I have and no longer fall. 12 times the year before last. Before the soles I fell twice giving myself 4 stitches over my right eye and a half grapefruit size lump on the back of my head the second time. Not funny but cured.

@logicalpaheliyaninhindi1350 10 месяцев назад

10 years with FSHD for me.. life is getting harder and harder, Now I can't hold anything, I Fall almost every month and injured myself badly. When I walk , I feel like walking on the Rope,

@denispaquet6983 7 лет назад

Great video Fsh friends!

@ingridortiz7347 7 месяцев назад

Hola, hace 30 años que recibí el diagnóstico, tengo 47, ya hace 2 años se me ha presentado más fuerte, uso bastón para caminar, mis piernas son cada vez más débiles y casi todos los días con dolor. Gracias a todos los que están trabajando en encontrar un tratamiento o la cura, espero estar para verlo y ser parate de ese gran descubrimiento 🙏. Saludos! 🌻

@antiocotart 2 года назад

I have polio and I look up to people like you with so much patience and strong resiliency to soldier on with dignity. sending love

@veidhehijagannathan4446 5 лет назад

Hope a cure is found to atleast control progression

@amirshakiba2400 7 лет назад

great video

@savitharaju4391 4 года назад

I am 19 year old boy affect with Fshd from India .my cpk/ckt level is 3000 is any medicine or food can reduce this

@natalist-germain6597 3 года назад

I have gluten free diet and i feel better.

@logicalpaheliyaninhindi1350 10 месяцев назад

I am also from India, there is no medicine right now dear

@maryvonnedecloquement8957 Год назад

Je suis française et atteinte de fsh2 J'ai 60 ans et les 1er signes de la maladie sont apparus lorsque j'avais 18 ans.

@rivkaleahrevah6272 4 года назад

Sara. If u wont 2 bcum a moderl, tay wil strayt erway tayc u Inn bcoz ur sow prity.

@ndri7 7 лет назад

Honored to add this video to the NDRI RU-vid channel on World FSHD Day!

@MrFed. Год назад

Diagnosed when I was 26 in 2007. I went to bed with a healthy right bicep, woke up next morning to brush my teeth but I couldn't lift my toothbrush. My arm vanished over night.

@williamjones573 Год назад

My left is disappearing, just a soft bubble now.