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  • Facioscapulohumeral Help - I think I might have fshd (teenage girl)

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    Old 11-20-2013, 09:42 PM   #1
    USgirl43
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    Exclamation Help - I think I might have fshd (teenage girl)

    My dad has fshd and I'm scared that I might have it too. My right shoulder hurts whenever I use it too much and lately my right eyelid has been twitching. The shoulder pain started when I was 14 and I am now 17.

    I don't know what to do. I don't want to talk to my parents about it because I don't want to make them sad but I don't know who else to talk to.

    Ever since I was little I helped my dad because my mother had severe anemia and had other two young children to take care of. I would take my dad to the hospital and wheel him around because his arms were too weak.

    He's doing much better now and can walk around without a cane(miraculously) but he still has a lot of pain.

    I'm really scared and I don't know what to do. I don't want to go through what my father has been through. No one will probably want to marry me and I don't want to have kids if they have chance of getting the disease. Even if they don't get the disease, I don't want them to have to take care of their mother like I had to take care of my father.

    How do I know if my shoulder pain is normal or if I'm having symptoms? Can anyone help me?

    Last edited by USgirl43; 11-20-2013 at 09:45 PM.

     
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    Old 11-21-2013, 01:51 AM   #2
    Seraph
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    Re: Help- I think I might have fshd (teenage girl)

    You do need to talk to your parents about this. It is to your credit that you wish to spare them pain but, if you do have this, they are going to know sooner or later. Your dad must know heaps about the condition and if anyone can help and support you, it is him. I don't know much about fshd, so I cannot comment on your shoulder. Talk to your parents and get it checked out. Sera

     
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    Old 11-21-2013, 09:37 AM   #3
    ben468
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    Re: Help - I think I might have fshd (teenage girl)

    Hello USgirl43,
    I'm 22 and have FSHD so I can hopefully answer any of the questions you have about it. I think Seraph does have a point but I know how you feel and have felt that way myself from time to time.

    My advice would be to try your best not be scared (it’s an extremely variable condition and your fathers symptoms would not necessarily be your symptoms) and pursue answers to all your questions because the answers are most likely out there.

    Last edited by Administrator; 11-21-2013 at 10:26 AM.

     
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    Old 11-26-2013, 09:11 PM   #4
    MomFromKansas
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    Re: Help - I think I might have fshd (teenage girl)

    Within the last year both of my children were diagnosed with FSHD. My son is 17 and my daughter is 20. It is nearly certain that either their father or I also have it, but neither of us are symptomatic enough to know which one to test first. Therefore rest assured that the symptoms are variable even within families. They say typically boys are diagnosed by the age of 20 and girls by 30. With the family history I understand your concern that your shoulder pain is an indicator. It may be...or maybe not. Your doctor can help you get answers so I recommend starting with a doctor about your shoulder pain while making sure he/she is aware of your family history.

    I really want to talk about your concerns for your life. My daughter could care less about her diagnosis, but was devastated about the probability that each pregnancy would have a 50% chance of producing a child with it. To be clear, my daughter does have back pain and goes to physical therapy occasionally. My daughter was born to be a mother (don't even get me started on how she mothers our dog) and she immediately began looking at options. While they do offer pre-implementation genetic testing which can accompany in vitro fertilization (raising conception/beginning of life debates and cost concerns), I am encouraging her to see where they are at with treatment options when the time comes. My kids had very normal childhoods and were completely unaffected until late teens. She is about to be engaged and my son is very open with his girlfriend about his diagnosis, the risk to kids, and that he wants kids. Our genetic counselor was very clear that most people have some genetic issue, but we just know what theirs is and it need not define them. I'm sure it has been tough watching your dad, but the sooner you have facts and can help strengthen your shoulder muscle the better off you will be.

    About finding out if you have FSHD, a DNA test is the most accurate. Some of the symptoms are "winged scapula" which means your shoulder blades stick out. The documentation says symptoms typically it starts in the face...with your smile affected. My kids have no facial changes but do have shoulder blades that stick out and when doing a push up against the wall their blades nearly touch. My son had a high AST and high CPK count during soccer seasons, but my daughter never has so that isn't a sure indicator. My son lost weight very quickly with heavy exercise (thus the reason I doubt I am the parent with the disease...losing weight would be ok with me). My son can't hold a "T" positions with his arms out for very long without shaking. Everyone can be different. Even if you have the disease, please don't let it change your dreams!

     
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    Old 05-16-2014, 08:42 AM   #5
    Igirl
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    Re: Help - I think I might have fshd (teenage girl)

    Quote:
    Originally Posted by USgirl43 View Post
    My dad has fshd and I'm scared that I might have it too. My right shoulder hurts whenever I use it too much and lately my right eyelid has been twitching. The shoulder pain started when I was 14 and I am now 17.

    I don't know what to do. I don't want to talk to my parents about it because I don't want to make them sad but I don't know who else to talk to.

    Ever since I was little I helped my dad because my mother had severe anemia and had other two young children to take care of. I would take my dad to the hospital and wheel him around because his arms were too weak.

    He's doing much better now and can walk around without a cane(miraculously) but he still has a lot of pain.

    I'm really scared and I don't know what to do. I don't want to go through what my father has been through. No one will probably want to marry me and I don't want to have kids if they have chance of getting the disease. Even if they don't get the disease, I don't want them to have to take care of their mother like I had to take care of my father.

    How do I know if my shoulder pain is normal or if I'm having symptoms? Can anyone help me?
    Hi .. FSHD is prominent in my family with varying impacts on multiple members. My daughter has prominent features of the disorder but I do not and I obviously am the carrier. She just recently had a surgery that helps the winging of the scapulae. Tell your parents and get to either the MDA clinic or a qualified rheumatologist. Wishing you the best. Oh, and my daughter has a 12 year old daughter who has absolutely no symptoms and she plays soccer very well!

     
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