Spinal Muscular Atrophy (SMA) Support Group

Spinal Muscular Atrophy (SMA) is a term applied to a number of different disorders, all having in common a genetic cause and the manifestation of weakness due to loss of the motor neurons of the spinal cord and brainstem.

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  • coleyfrost

    Fertility and SMA

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    My husband is 29 years old and has SMA. We recently decided to start a family but have been unsuccessful this far. We sought testing at a fertility clinic to make sure his disability would not present any challenges and when we received the test results, the new wasn't good. I am looking for life experiences from others who have SMA and have started their own family. We are unsure as to what our...
  • 2DanceAgain

    Kennedy's Syndrome

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    I am looking for other people who have or are the spouse of someone who has Spinal Bulbar Muscular Atrophy also know as Kennedy's Syndrome/Disease. It is a rare genetic condition that effects only males, but the defective gene is carried by females. My husband was just tentatively diagnosed with this disease. We are waiting for a genetic blood test to confirm the diagnosis. The symptoms...
  • My doctor and I are having a difficult time finding an anti -depressant that I can tolerate. I used to take Wellbutrin XR but can no longer swallow it. Although it can be compounded, it would have to be taken four times a day which is a little inconvenient for me. I have tried compounded Effexor and Zoloft, but they have both left me very weak and giving me diarrhea which I simply can't...
  • deleted_user

    Hey!

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    Hey I have SMA type 3 Im also in a wheelchair full time I'm 15 and I'm just living life like any other girl my age, I really noticed I needed some one to talk to about my problems someone who can understand, So Message me if you want to talk! :)))
  • deleted_user

    Adjustment to SMA

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    My niece is nine years old and thus far has been doing well coping with her SMA diagnosis, but I notice she is angry at times and unable to express it. She has been to a therapist before and some progress was made but in general she still is having difficulty expressing her feelings. She is unwilling to talk about how she is feeling at this time. Does anyone here have experience with the same and...
  • brettway

    Tattoos?

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    Anyone with SMA ever get a tattoo? Wondering about any kind of nerve damage since there is not a lot of muscle to protect them like most people.Thanks
  • Hi, all!My name is Monika, I have disease Spinal Muscular Atrothy 2 type, I am 29 years old, I am from Belarus. I have very much scoliosis. In the near future I want to do surgery scoliosis but after a few years, I want to participate in clinical trials of drugs that SMA will be injected into the spinal cord. This surgery will not interfere injection through the spinal cord? This very important...
  • deleted_user

    Ryker Don

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    As most of you know nearly 7 years ago, I lost my grandson to SMA. Over this past weekend, my great nephew Ryker ended up in Cooke's Children Hospital in Dallas. He is 10 weeks old today. He was having difficulty breathing and wasn't eating. So far all they are being told is that it is muscular. I had to contact the maternal grandmother, since the paternal grandmother (my late sister in law)...
  • deleted_user

    Leg Issues

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    I am non-ambulatory and lately my legs get so restless at ALL times and spasm really bad but I also have this weird feeling that I can only relate to what is known as "phantom pains" my legs start to "feel/act" as if they are moving or wanting to support my body while standing or walking, but then it's like they realize they aren't doing anything and I start getting real sharp pains from my hips...
  • deleted_user

    Muscle spasms & dire pain...

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    Just wondering if any of you deal with severe muscle spasms with relentless pain atop of the muscular atrophy? I have Baclofen, Zanaflex, Flexeril and another neuromuscular med -- sometimes it\'s a hit or miss as to which one will provide the greatest benefit and it gets frustrating. (Sigh) Thanks in advance for your feedback. Blessings and peace to you each this day and always!
  • Hello to everyone, My name is Carrie and I am a soon to be 27 year old diagnosed with SMA at the age of 14 months. I am the first, and only, member of my family to be diagnosed with this disease. When I first showed symptoms of the disease my parents took me to many different doctors who had no idea what was wrong or going on with me. It was only after visiting the doctors at the Shriners...
  • Only 12 days after receiving the diagnosis my baby passed away from SMA Type 1, she fought so hard but just didnt have the strength to carry on. Please please read and pass this link on to your friends and help us to raise awareness and funds to help others, to provide the support we lacked ourselveshttp://allycadence.co.ukhttp://actsma.co.ukThankyou, and to anyone reading this who has a baby...
  • I need all the help i can get on here to ..The doc..says i have (SMA) in my neck now ..it has mest up my walking now my neck hurts and my back legs .. where do i go from here now
  • deleted_user

    New to the page

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    Hi, My name is melissa and I am new here. I a mother of 4 including my step daughter with sma type 1.I am looking for people to talk with about the daily challenges of daily life...Glad to be here :)
  • deleted_user

    Muscle spasms?

    1
    Does SMA cause muscle spasms? Ive have been having them for 3 weeks straight and nothing seems to help. They don't hurt but are very annoying and make walking a chore.