I understand the intent and need for such videos for whatever they are intended for, however as I have this disease as well there is one thing I know for sure, feeling sorry for oneself is THE absolute worst thing a person with any disorder can do. Finding ways to stay positive all the time is the hardest thing in the world, I know this for a fact as I have been living with FSH for 25 years now and I am even in a wheelchair now.
I can see, by your response ohcmeon, that you have never had a child. If you haveI wonder if you are adequately meeting your child's needs. I find your views selfish and uninformed. Parenting is a physically demanding job well beyond the infant stage. You need a strong, reliable body to parent effectively. Kalynn knows that she would fall considerably short of providing what every child needs. And good parenting is about meeting your child's needs, not meeting your own ego needs.
I find this video too pessimistic. I have a rather severe form of FSHD and have been using a wheelchair since my late teens, but being in the middle of my 20ies, I am still completely independent, going to university and have had a few jobs already. I see no reason not to have children - you can either test the embryo for the disease or get egg selection done + in vitro fertilization. There's absolutely no reason to act like your life is over.
@ohcmeon The intent of this video was to show people attending a fundraising event, and previously unaware of FSH, the impact – physical, mental and emotional - it can have on a person’s life. It is in no way a complete story though, nor a good representation of who they are as people. I'm sure the impact FSH has had on your life varies from the three people profiled here, however, I can assure you their optimism and yearning for a fulfilling life is no different than your own. All the best.
@ohcmeon On the contrary, I find the video inspiring. I think the people featured seem to be coping very well with the daily setbacks and I don't see them as pessimistic so much as realistic. Personally, I think it would be irresponsible to have a child even if you don't pass on the condition, as children require a great deal of care. Perhaps more than a person with a serious disability can provide. Kalynn is a responsible young woman to consider sacrificing what she wants to protect a child.
@twobluecats I fail to see what exactly she is protecting the child from. FSH only affects the body, not mind. Sure, the first few years you need to breastfeed, change diapers, and lift the baby, but all of that can be achieved with a partner and possibly an assistant/nanny. There are also special baby beds and strap-on carrying devices for mothers in wheelchair (only a few FSH need a chair). After these 2-3 years the disability should not affect parenting in any noteworthy way.
I have often wondered about having children. It was recommended some years ago that I not have children due to the genetic factor. But even if I could have mine own or adopt, I still wonder how I would take care of them. I try not to think about all of this too much because it does get me down. My hope is that I will succeed in college so I can get a job using my mind more than my body.
Wow. This video is very moving. I was diagnosed with FSHD when I was 11. I do have some difficulties with stairs or inclines or uneven surfaces but I still can manage. I try to find an alternate way of doing some things if I can. I don't use a wheerchair at all. I can do many things. Although I'm not very strong when it comes to opening jars and stuff or carrying heavy items. I do go to college and can carry my books in a bookbag.
I understand the intent and need for such videos for whatever they are intended for, however as I have this disease as well there is one thing I know for sure, feeling sorry for oneself is THE absolute worst thing a person with any disorder can do. Finding ways to stay positive all the time is the hardest thing in the world, I know this for a fact as I have been living with FSH for 25 years now and I am even in a wheelchair now.
oldscool101 3 hours ago
Wow. This is really sad, but I seriously don't know how I got here from dubstep. @_@
hieveryone9872 1 week ago
I can see, by your response ohcmeon, that you have never had a child. If you haveI wonder if you are adequately meeting your child's needs. I find your views selfish and uninformed. Parenting is a physically demanding job well beyond the infant stage. You need a strong, reliable body to parent effectively. Kalynn knows that she would fall considerably short of providing what every child needs. And good parenting is about meeting your child's needs, not meeting your own ego needs.
twobluecats 1 week ago
I find this video too pessimistic. I have a rather severe form of FSHD and have been using a wheelchair since my late teens, but being in the middle of my 20ies, I am still completely independent, going to university and have had a few jobs already. I see no reason not to have children - you can either test the embryo for the disease or get egg selection done + in vitro fertilization. There's absolutely no reason to act like your life is over.
ohcmeon 11 months ago
@ohcmeon The intent of this video was to show people attending a fundraising event, and previously unaware of FSH, the impact – physical, mental and emotional - it can have on a person’s life. It is in no way a complete story though, nor a good representation of who they are as people. I'm sure the impact FSH has had on your life varies from the three people profiled here, however, I can assure you their optimism and yearning for a fulfilling life is no different than your own. All the best.
JMBoyer5 11 months ago
@ohcmeon On the contrary, I find the video inspiring. I think the people featured seem to be coping very well with the daily setbacks and I don't see them as pessimistic so much as realistic. Personally, I think it would be irresponsible to have a child even if you don't pass on the condition, as children require a great deal of care. Perhaps more than a person with a serious disability can provide. Kalynn is a responsible young woman to consider sacrificing what she wants to protect a child.
twobluecats 2 weeks ago
@twobluecats I fail to see what exactly she is protecting the child from. FSH only affects the body, not mind. Sure, the first few years you need to breastfeed, change diapers, and lift the baby, but all of that can be achieved with a partner and possibly an assistant/nanny. There are also special baby beds and strap-on carrying devices for mothers in wheelchair (only a few FSH need a chair). After these 2-3 years the disability should not affect parenting in any noteworthy way.
ohcmeon 1 week ago
Hi mbillie, what's your asl????
You can try for children, just make you sure you do the Chorionic villus sampling to find out if its got FSH
smartiboo 1 year ago
I have often wondered about having children. It was recommended some years ago that I not have children due to the genetic factor. But even if I could have mine own or adopt, I still wonder how I would take care of them. I try not to think about all of this too much because it does get me down. My hope is that I will succeed in college so I can get a job using my mind more than my body.
mbillie1125 1 year ago
Wow. This video is very moving. I was diagnosed with FSHD when I was 11. I do have some difficulties with stairs or inclines or uneven surfaces but I still can manage. I try to find an alternate way of doing some things if I can. I don't use a wheerchair at all. I can do many things. Although I'm not very strong when it comes to opening jars and stuff or carrying heavy items. I do go to college and can carry my books in a bookbag.
mbillie1125 1 year ago