Growing Up With FSHD - A Short Documentary 

I have no idea why this video was recommended ,or why I clicked play .I do know why I watched the whole video. It is so well done . Your ability to successfully command, and capture the undivided attention of complete strangers is a gift . I wish you and all FSHD warriors strength, happiness , and a cure.

I have had FSHD since I was in High School. However I was diagnosed in 2014 but the Doctors failed to tell me until a month ago. My life has been in disarray the last 10 ywars as my body kept failing me and I had no answers and no support. I thought I was alone. Now I don’t feel alone and i’m scared but watching your video and your strength and bravery. Your courage is something to strive for. Thank you for sharing your story.

Thank you sharing your story. Fshd needs as much exposur it can get. It is such a rare condition and even some doctors are not even aware of it. With more awareness, more research, together we can learn more about this disability. What helps? Learn the dos and don’t to maintain and improve muscle mass. And ultimately to bring attention to researchers to work hard and that there is a strong need to find cure for fshd - if not for our generation then the next🙏

Hi, I noticed this was posted in 2017. I’ve just watched it.(2020) My wife and both my young daughters have FSH. Everything I’ve watched I can relate too, we’ve been there and done it, trust me!!!. God bless you and all your family.

Great work! I also have FSHD ... the hardest thing in my life is giving a smile ...... I don't really care about death if this disease improved ... I only can't accept that I eventually will set on a chair and be in need of others and be so weak to live a normal life... I hope one day soon that a cure is found and make me able to smile again ☺ ...

This documentary was so well done and I found it incredibly informative. I had no idea how diverse peoples’ experiences living with FSHD could be. Thank you so much for sharing you and your family’s story!

Wonderful documentary. Watching your mother climb the stairs and your uncle take down the pot is so relatable. I too was an athlete but could never understand why I couldn't do sit ups or lift my arm over my head. I was finally diagnosed at 38 after believing it was just an injury all those years.

Thank you Lexi for sharing your family experience with FSHD. I was diagnosed in 1984 when I was 28. I served four years in the U.S. Army from 1976 through 1980 and it was during this time that I began to understand that I had some sort of problem with certain muscle groups weakening not to mention my shoulders seemed bony and my scapula would stick out. For most of my life I have been self conscience regarding my body because my upper torso was just different. I would always wear a shirt even when swimming. The good news is that early on I was able to do most of the things other kids did. As a teenager I took up weight lifting and although I didn't excel I became much stronger. My legs during the early years worked pretty well and I enjoyed running, bike riding and hiking. Somewhere around the age of 30 I just stopped being able to run. It almost seemed like it was overnight that I just stopped being able to move my legs fast. I could still ride a bike and hike but as I'm fond of saying: “I couldn't run if my butt was on fire.” I was struck by the part of your video that shows how difficult it is for your Mom to use the stairs. Her shoulders seem to be very much like mine (the architecture) and I go up stairs one step at a time. Personally, I rely heavily on the railing to pull myself up. In 1984, the year I was diagnosed, there was little information available regarding FSHD and I know for certain the disease was not often recognized by doctors. Your most excellent video helped me understand there are people out there like myself having the same issues. In addition to watching your “Growing Up with FSHD” I checked out a couple of the others you created - you are so talented! Thank you again for sharing your experience and creating some great videos.

I came across your video by Googling FSHD. For almost 1 year, I have been going to neurologists that could not figure out why I have asymmetrical muscle loss in my legs. One calf muscle is much smaller, one hamstring cannot support much weight. Since I was very young, I slept with my eyes partially opened. But a lot of people do. In my late teens I developed the inability to pucker my lips or whistle. The facial paralysis in noticeable and I attributed it to Bells Palsy, even though I don't ever remember being stricken. Then in my 30's a winging scapula. I visited so many doctors for that condition, not one of them the wiser. I was a dancer and very athletic. Played tennis, continuously worked out. Now in late 40's, the lower body weakness has set in. I have had 3 EMGs, 4 MRIs with a concrete reason why this is happening. Though I have yet to be diagnosed, it seems that all conditions and the timeline fit. Which type of medical specialty is best suited for a true diagnosis and treatment?

I have FSHD as well. This was a great documentary. Thanks for generating awareness. I too have hidden this disease for many many years, but now at almost 42 it's becoming obvious and can no longer be hidden. I'm trying to not care what others think...I'm getting there. It's taking time. Thanks for all your courage. One day I hope to have as much courage as you to share my story and raise awareness.

Thank you for this well made and poignant documentary. I was diagnosed 44 years ago stay strong, all of you! What we cannot do with our body, we can do with our brain and heart!

I was diagnosed with FSH MD in 1984. Thanks for this video. Very well done. :)

Thanks for sharing this with everyone! I didn't know about it. I applaud you and your entire family!

Thank you for sharing your story.I know this will reach far and wide... it's so well done!

I understand many of the issues you so eloquently shared with the world. It is no fun to live with this disease. Personally, I was able to function rather well until the late 90's but now am fighting the progression along with advancing years. I am now 75 years old and use a powerchair to get around. One point missing was the high cost when having to adapt your world to accommodate FSHD. Ramps to access my home had to be built. My bathroom required extensive renovation and doors had to be widened. A used wheelchair van cost us more than a new car! There are many other costs not mentioned here. I am extremely lucky to have loving and caring wife who aids me in maintaining a useful life. I couldn't manage without her. Thank you for sharing your experiences with this terrible affliction.

Thank you Lexi. This was amazing and very touching. Your family and friends must be so proud! All the best for you and your family. My thoughts and prayers are with you. Stay strong and just keep going. You got this!

This is so moving, eye opening and informative.

Thanks from someone who had no idea about the disease or what you all go through. Kudos on a good film and your inner strength.

Thank you Lexi for sharing this documentary. It was super helpful and cleared so many doubts related to symptoms of FSHD

you are an amazing and beautiful young woman. thank you for sharing your story and bringing awareness. Blessings to you and your family.

Excellent video . I have never heard of this and I now know. Thank you for giving me this information. You are doing people a good service by making this video. Thank you again.

Thank you to you and your family for sharing your story of life with FSHD. Awareness is a major obstacle in rare disease fund raising, your documentary is a good means of helping us increase that awareness. Thank you!

I also have FSHD. Loved the video. Thank you for sharing your story!

Fantastic job Lexi! So many things you and your family said ring so true to me and I'm sure many others of us. Thank you for having the courage to make this documentary and being such a great inspiration. Stay strong and keep fighting!

Thank you for this. Several members of my family have this, including myself. It was very well made. It's a very frustrating condition as for many it's not immediately obvious so if you were standing still or sitting down people might not even realise you have something wrong.

Great video! Thanks Lexi for sharing our FSHD story. As we build awareness I am confident one day we will find the cure! FSHD STRONG!!

Why would anyone dislike this awesome video?! This was SO WELL DONE and so inspiring!

My name is connor, I recently got diagnosed with fshd and my shoulders and triceps were very weak. Just like you, in sixth-seventh grade... i was a basketball freak, than my muscles were getting weak and 3 years later (9th grade) i found out i had it and it tore me down. I’m still going strong but getting weak over time... i doubt anyone will see this but if you do, this is a serious thing and i hope no gets this.

Well done Lexi!!! I have FSHD as well. As I am sure you know now we have learned that FSHD is not a "rare" disease but is now the largest group of all the 49 Muscular Dystrophies. Part of that issue has been the medical community not properly identifying those afflicted. Prior to twenty years ago there was no definitive test for our disease. Recently we finally received our own FSHD health care code which will provide a more accurate count of those under treatment via insurance coding for diagnosis. I totally agree that it is critical to create awareness and education and in doing so also provides emotional growth for yourself. As an adolescent all one wants is to be "Normal" fortunately your generation is open and accepting to "differences". Please continue to educate, we as a community through the FSH Society toward a cure or treatment believe that you and your future family will become as normal as you want to be. Keep the faith.

you're such a great example for people living out there you're living with a weakness and despite this you're doing an improvement! this is inspiring with struggle and hard work values

Great personal documentary. It is amazing the variability of symptoms FSH .

I have this disease in my family too. Thank you for making this documentary. My grandfather had it and was a great concert pianist for his entire life. He didn't let the disease stop him from living his life and he raised three children. I actually remember when he died he said he had no regrets from his life, even though he did die from complications from this disease. He was told at 15 he was going to die very young but he actually was okay and walked for 50-60 years.

Thank you, Lexi, for a wonderful piece. I am 67 and was born with FSHD. I found myself validated as I watched your movie, seeing your family explain my own weaknesses, inabilities, embarrassment, pain and eventually the growth of knowing that we can all succeed, just in different ways. Thank you for making the time and putting forth the effort, and for opening your family to the world. You've made a difference! God Bless! ..mike..

You are inspiring. Thank you for sharing your story Lexi!

You are an awesome spokesperson for FSHD, keep up the good work. 💕💕💕

Thanks so much for sharing your story and experience with FSHD

Such a brave young lady.such an inspiration

Thank you so much for making this available. I learned so much I never knew before by watching this feature. I will be spreading the word, but more importantly, I will be thinking about you all everytime I reach up to brush my hair or do many simple things that I heretofore took for granted. I applaud your unfaltering strength in the face of adversity and your fantastically positive mental resolve.

Amazing. Idk how this got into my recommend, but it really touched me. Best of luck and stay strong Lexi!

Go Lexi! All the very best from Scotland 👍☺

Thank you for the documentary. I'm an exercise physiologist from Sydney, Australia and have a client I'll be seeing who has FSHD. This video gave me a heap of useful insights into the daily struggles faced.

Very well done. Rarely watch whole videos. This one's an exception. Thanks for sharing:)

Lexi you are so cool! I loved seeing you pick up the pillow with your toe.

Thank you for sharing. I had never heard about this condition. Thank you for helping in getting more focus on this. Love from Denmark :)

The incidence rate of FSHD has been underestimated for some time. It's been thought to be about 1 in 20,000. More current estimates are about 1 in 8,000. It's conceivable that it is actually more common than this. Why? Because of the wide variability of the disease. Currently, FSHD is considered to be the third most common form of MD, behind Myotonic and Duchenne. The good news for those of us who are affected is the greater the prevalence actually is, the more likely research dollars will be invested into finding a cure or at least a treatment. 2019 may be a great year for these efforts as there are two if not three new clinical trials that may happen. We recently visited a research lab in Reno, Nevada that is on the cutting edge of epigenetic research of both FSHD 1 and FSHD 2. We made four videos spotlighting their work. It's all very encouraging!

I’m glad this popped up in my YT recommendations. I hadn’t heard of FSHD before. I’ve been dealing with unexplained muscle weakness for a few years. (For example, climbing stairs has become difficult. My muscles feel like they are on fire. Ten years ago, I could climb four or five flights easily.) This video has given me some things to consider. Thank you for sharing your journey, as well as your family’s journey. I hope they find a cure for FSHD soon! ❤

Thank you and your family for sharing. I too was very athletic and realized there was something different about me when I was about 12-13 yrs old. I wasn't diagnosed until 40. I thought I had a thoracic nerve issue. I was stunned to hear it was FSHD after a proper blood test.

Excellent video Lexi! While I don't have FSHD, I do have a very severe scoliosis and experience similar physical limitations as you do. So I completely understand how you must feel and for me it's really helped me to know that there are other young women out there living a similar life to mine! Sending you and your family love and light! xx

thank you Lexi, you are truly an inspiration. i will be 50 next year and my FSHD bugs me all the time but im like yourself i workout 3/4 times a week and keep as active as possible. keep it up. J

Such a great documentary! Really informative and touching!

It's amazing what you did, I read your article on Instagram Mdnewstoday and I came to see your video. I have Lgmd2a and it's quite similar. Kisses from Argentina!!

thank you so much for sharing your story.

Thank you for sharing your story. My daughter has FSHD. You are so strong, and I admire your willingness to educate people by being vulnerable. Wishing abundant love and support on your journey.

Wow! I never knew about FSHD I watched this with my kids. We think you're amazing thank you for sharing this

Sorry for the loss of your grandfather! This disorder really sucks I have it and muscles around my lungs are getting weaker which is really scary! My shoulders, arms, and legs are getting weaker. I'm 42 and most people can't tell I have it because I hide it well but the fact that I can't walk fast even without being able to catch my breath just stinks! I hope stem cells and CRISPR really make a lot of improvements and leads to a cure soon! My fraternal twin brother has no health issues and I have FSHD, Tourettes, IBS-D, and FSHD. Just frustrating because it we are so close genetically how do I have all these issues and him none!?!? One would argue living and surviving are 2 very different things! Good job with the video and let's keep fighting the good fight!

Thank you for your documentary and putting out awareness. My 36 year old sister lost her battles this past June to FSHD.

I cried watching this because it's so relatable for me, I'm only 14 this year and I'm quite sad I can't do much by having such a weak body You're a strong person Lexi! Let's just hope they can find a cure for this in the next few years

What a beauty! Wow. Strength makes a woman even more beautiful ♥️ wishing you all the blessings in the world.

I feel her pain ..as i have the same problem..its difficult. But we stay strong..and never give up ..and know ure not allone in this

You're beautiful and I can't even tell anything is wrong with you at all. You inspire me, as in 2012 I was dx with stage 3c ovarian cancer. I'm having a lot of issues lately(hernia surgery 2 months ago and bad acid reflux)so watching your video, motivates me!

I have FSHD, your not alone in this we can all help each other. Hoping that there will be a cure for it one day🤞🙏

Thank you ❤

Great film and story.

I'm so proud of you. Being a person with the same conditions, life can get hard at times. But I can safely say that I am not alone at all. Thanks for letting me know that I'm not alone.

You are an incredible spokesperson for the human race. Among the very best of us. Thank you for redeeming us.

Thank you. I had never heard of this disability.

Loved it Lexi!

I have FSHD as well you are so beautiful and so strong... im a business owner in NWA i built a business from the ground up not coming from much. It would be the coolest thing in the world if i actually knew someone that has been trhrough what we've been through. You are such an inspiration!

You're so beautiful. Your facial structure is so beautiful, my goodness

Hi Lexi! I want you to know that you're not alone... I'm almost 40 and have been dealing with this my whole (adult) life. I share many of the same struggles and hope to start making some educational videos such as the one you've showcased here. I want you to know that you're beautiful, and that this disease can't and won't beat us. I think you're amazing for putting this together. Keep on fighting the good fight and don't EVER let this POS disorder get the better of you. I hope you'll reach out if you ever want to talk or compare stories. Stay strong and don't ever give up!! 💪 Edit:: Also, I love the shirt by the way!! 😁

Great video. I love it. I have 21 years old and I also have FSHD. For me its impossible to put my hands in the top of my head because my arms don’t go there. And I also have a lot of issues with my face: I cannot drink something using a straw, Its hard to pronounce words starring with b,p and m, and my eyes don’t shut completely when I close them. And in the last 2 years, the muscle of my right arm just disappeared, so I cannot lift up the way that the other one do. Its very hard to live with this but I’m grateful because I’m alive. God bless you!

Thank you for sharing

Wow, very odd seeing people for the first time in my life that have what I do. In September I will turn 60, and have no idea how much longer I can continue to go to work. Just too difficult getting up off the ground, picking things up, and walking. Who knows what the future holds...God Bless...

I love people!!!! You are so pretty, and you have inspired me today. Much love.

"I thought I was a weakling." Me, too!

Hi Lexi interesting to here I am not alone and somebody else also born with that! I born with FSHD was diagnosed in California, and I from Israel , hope to meet people born with that disease.

Lexi-How rare that I would come across your story on Fox 25 News and posted on my brother's birthday-June 21. he is Down Syndrome and special to me anyway but also to see that you posted this in memory of your grandfather who just passed in 2016. My son Nick was recently diagnosed with an unspecific form of MD. He, too, just lost his grandfather and has been impacted by many similar struggles. We saw a neuromuscular doctor at Children's in Boston, last year, who originally thought he had FSMD. From the time Nick learned to walk, we have been perplexed by his daily challenges. His symptoms are so connected to how your family presents-from the core weakness to climbing stairs, low tone, difficulty with situps and pushups, etc. We have been chasing a diagnosis for 12 years, at least. To watch your documentary and have everything you say seem so clear-so apparent-is MIND BLOWING. My son, who is now 15 was seen my PT's, OT's, physiatrists, neurologists, has had muscle biopsies (misread) for over a decade and finally-we have somewhat of an answer. He is now in a clinical study for families with MD at Childrens. Your story resonates so strongly with me as Nick's mother, and the mother of two otherwise healthy, active brothers of Nick- more than you can imagine. The message I heard from you was positive, strong, persistent and hopeful. I'd love to put you in touch with him as he begins this unknown journey of MD. Not sure how he's react or feel but regardless-I want to thank you for sharing because if you have touched just one family-given one person hope, or brought about an awareness that needs funding, research, etc. then you have done your job. I'm very proud of your knowledge, acceptance, and bravery!

So well done Lexi! Congratulations!

you can not be education on something you don't know is out there. thank you lexi for this video ...i don't believe many ppl like myself know about MD'S diversities...maybe more of the jerry lewis telethons could have been used in educating the public in general about these diversities. a misconception i had is that MD was recognizable from birth and therefore diagnosed early. BLESSING TO YOU TO KEEP UP THE GOOD FIGHT ...FSHD IS WHAT GOT ME HERE, BECAUSE ACRONYMS ANNOY ME ....ONLY CUS PPL THROW THEM OUT THERE LIKE THE WORLDS POPULATION ALL KNOW WHAT THEY ALL MEAN EXCEPT ME. WELL LEXI NOW I GET FSHD AND THAX,S AGAIN BEAUTIFUL !!!!!!!!!!!

Well,I’ve just been diagnosed with this and I’m 14 but well done for staying strong through this x

It is so crazy how differently this affects us who have it. I was not diagnosed until I was around 21-22 years old. I played sports at a high level and went to the Army after high school. Not one person in my family had ever had it. When diagnosed i was told i would be in a wheel chair within five years. I am now 45 and have yet to see a wheel chair. I do have foot drop and if i do not pay attention when walking (get too comfortable) my quads are extremely weak and i trip and fall. The bad part form that is i do not have the strength to stand up on my own. The thing that hurt the most was emotionally. When going to the MDA clinic it just made me more stressed and depressed. They never gave me hope and just always showed me worst case scenarios. The biggest thing that helped was getting my testosterone level checked. Not sure if my FSHD made it low but as it as supposed to be around 900 it was actually less than 100. I have been on testosterone therapy for around 8 years now and work out at least 4 days a week. My levels are normal now and read around 900. My abs, mainly my left side, have started to weaken and am not able to really work out on them, however; and it may sound crazy, i purchased the "Flex-Belt" and that has helped to strengthen my abs and has brought my torso forward a little and not lean back so much.

You’re awesome

My 7 year old has FSHD and she's having a hard time coping with understanding it. She would love an opportunity to speak to you and see someone like her.

I have beckers MD I relate to this a lot.

I have f.s.h.d tape 2 which is slower to take affect i didnt show signs till early 20,s like you i was very sporty i played alot of rugby and football and was just newly qualified as bricklayer . I have had both my scapulars pined to my rib cage and my rage of my motion has inproved 75% i also work very hard on my in the gym to hold on mobility i stuffer foot drop in my right foot and muscle loss in lower leg but keep pushing hard work cant cure it but will slow it down like we say in northen ireland NO surrender!

she is so beautiful!

Very informative

I have bekers muscular dystrophy and I kinda relate to the sport issue. It tears me apart that I couldn't be in every high school sport. But today I just hunt, fish, ride my sport wheeler and just staying active. I just wish people would understand this documentary.

wonderful advocacy keep spreading the news and I hope a cure comes to you soon may karma bless you for all the good you've done and are currently do

Lexi, what an awesome job! Who did the camera and audio work? It's very well done! Stay strong and focus on what you CAN do and NOT what you can't.

Hi, I too have it. Yes "it". The pain seems to stay, and now so common, don't even notice it. But I know, it's there. Especially when I walk or stand for too long. I have been going to the gym, my doctor here in Italy tells me to stay away from that, because, our muscles will detoriate much faster. Is that true?? It's so frustrating! I Feel for you, listening to what you are saying, it is all the same for me. I feel you.

Very informative documentary, my doc tested me for this but does not seem to be the case

i posted word for word because this is helpful information and wanna spread the word about this condition. also it fatigues me to type so i just copied and pasted because then my arms do not hurt as much as i can express my similar expression with out causing more pain. not calling you out i know its a bit odd if the same exact post is on other channels. i just wanna create more dialog also and get more awareness out about this disability.

Awesome way to share your story, Lexi! I have a neurological autoimmune disease. I'm sure people have suggested a million things... here's 1,000,001: is hematopoietic stem cell transplant a treatment option? I know breakthroughs in MS have happened with Fred Hutchinson in Seattle and the Colorado Blood Cancer Institute. Best of luck!

Robots could help I suppose, it is not a cure but it gives more quality to life. Lost of support. Thank you for charing. I learned a lot with this film and mailed it to other people. If you ever pay a visit to France you're welcome ❣️

I'm 60 and I'm diagnosed fshmd2 on April 22 only... I'm à French woman.

Brilyernt doc

i have to go to the docters tomorrow to have more testing done im 15 and have fshd i've had it as long as i can remember but when i was litle it wasn't as bad most my family has it but now i'm in foster care and they don't really understand how it makes me feel so it kinda makes me think im by myself when im around them.

Lexy you are so beautiful and brave girl, I pray that may Allah Almighty bestow you full health , happiness and success ❤

Thank you for sharing your story with us. Is the FSHD society the best place to donate? Thank you again💜💜