Duchenne Muscular Dystrophy

Hi, my name is Bafusfamily4.
Mom of two boys living with Duchenne muscular dystrophy. Alongside her husband, she shares the raw, real, and hopeful moments of their journey on YouTube at The Bafus Family, creating a space for other rare disease families to feel seen, supported, and never alone.
#MightyTogether

I’ve lived with DMD for over 30 years and the progression has been relatively slow. I was 2 years into a postdoctoral fellowship after earning a PhD in engineering. Things were turned upside down in December 2021 when I was hospitalized with a septic gallbladder. This was the first time I had ever been through surgery of any kind. I was intubated and then fitted with a feeding tube, which prevented me from speaking. After 45 days and a tracheostomy, I was finally discharged to my home with a portable ventilator. Not to mention a hairline fracture in my hip.

In the last year and a half I’ve been through a long rehab process and I am able to talk, eat, operate my power chair, and just made my first overnight trip in 2 years. Since I’ve been unable to work with much more downtime, I decided to start reevaluating myself and my situation. I started volunteering for nonprofit organizations helping other people with disabilities and it has been amazing! I’ve reconnected with elementary school friends who I haven’t talked to in 20 years. I joined online dating sites to search for a partner (ongoing) and started to ascertain my ability to potentially have children once I find the right woman to have a family with.

None of this is to say I regret my graduate work or years before my surgery. I’m thankful for all the work and sacrifices loved ones and colleagues made during my years at the university where I worked. However, I’m now finding that there are many areas of my life that were lagging that mean too much to be ignored. One of these areas is mental health. After all, my time in the ICU took me to extremely dark places that I still have trouble avoiding at times. I am excited to join The Mighty to share my story and to provide help to others who want or need it!

Hi, my name is AndrewYau. I'm here because my nephew is diagnosed with DMD, in hope to find friends with same issue for Matthew.

#MightyTogether #DuchenneMuscularDystrophy

Hi, my name is AndrewYau. I'm here because my nephew is diagnosed with DMD, in hope to find friends with same issue for Matthew.

#MightyTogether #DuchenneMuscularDystrophy

one i dream of that we will find a vaccine to duchenne muscular dystrophy , that our boys we live full long life.

to see them get married finish school go on vacation be grandparents to be part of our community , and live

life to fullest. that we appreciate what we have and greatful that we have been given today, not worry about

tomorrow . i dream that one day we treat just like every one else with respect and love for who we are.

i dream that we will make a difference, and be value for the people we are. i dream that we love our own

music and celebrate our life, with any one telling we can’t . i just want to dream that there won’t

be any more war or disease , just to live in peace. is that so hard to ask. why do have to put

our slef down just because we dont look a certain way, or speak, look what they want to be.

make fun of others who are different or have a disability , what make them so special.

we are just the same as others. we love the same to. i just dream that one day we can just

love and be in peace kimmy

Hi, my name is SEBASTIEN. I’m new to The Mighty and look forward to meet people who will help me with dealing with my son's DMD diagnosis

#MightyTogether

I’m not all sure how this works so I thought I’d just introduce myself first.
My name is Matt and I’ve had multiple sclerosis for a very long time and for various reasons I have only ever taken one DMD and only for a short period of time. As usual I’m trying my best to give some information about my life and situation but don’t want to come across and needy or in search of sympathy but im sure you all understand and as usual only fellow MSers will understand anyone it.
I have a habit of rambling on a bit 🙄😆 but when it starts to come out it really comes out. I was diagnosed with MS aged 40 but it appears I’ve very likely had since at least 19 when I was diagnosed with optic neuritis, I had no idea what that meant and neither did anyone else it seems but at least I was in blissful ignorance for the next 20 years and wasa fairly normal bodied person with the odd issue that I always blew off.
Fast forward to the age of 34 and my wife passed from cancer which obviously had a huge impact on my then undiagnosed MS but as always happens I learned to live with it as much as I good and now I was left with two children to care for aged 34, I didn’t have a clue, I had given up my job six month earlier to look after my wife which ended up the best thing I could have done because we got to spend a solid six months together fully in every way and it was priceless.
Then after a reasonably short time I met someone online and of course they lived across the pond in America. Ff again and I moved to the states and married this woman. Life just went on as we raised out respective kids together until I had my MS diagnosis and that’s when she decided she wanted a divorce Wichita was devastating to me as I had nothing, she was a successful lawyer and I was a handyman that couldn’t use his arm which was totally numb and stayed that way for 8 month and thank the lord I recovered most of its use back. I started to drive Uber lyft to make a living , my car got written off in a pretty bad accident and I also had health issues following it .
Ff again and I met another lady who I absolutely worshiped but in known to me she was a meth addict who after about 4 years into our relationship she killed herself. Again I was devistated and I was also evicted from the apartment we lived in so now I was also homeless walking on a walker with nowhere to go. I’ve been living where I can ever since then in friends garages etc. I hope this doesn’t sound to whiny or needy I just get carried away and I guess this is a kind of Theropy.
I’m trying to write this in stages so that I don’t repeat myself which is always a possibility.
I get terrible (cogfog) as I call it and can completely forget what’s going on or been said I’m not even sure this post will make any sense and I’m also sure I’ve probably missed things but there ya go, that’s me.
Hi everyone, it’s nice to meet you all and I hope this post is ok🙏
#MultipleSclerosis