Uncertain Future

I am a 30 year old woman who was born with a rare form of Muscular Dystrophy called Congenital Fiber type disproportion.

Right now, I battle a lot of pain due to several spinal fusions and reconstructive surgeries on my feet. I feel like my body is crashing. I went to college 5 hours away, did it in 4 years, lived in NYC for 3 years, then it all ended. My body slowed down. Surgery left pain and my muscle disease made it hard to get out bed. I battle depression. I work 20 hours a week, when I used to work 50 after college. I'm having a hard time letting go of the old me. I miss her. I know she's in there.

I have met a wonderful man. Like no one I have dated before. He sees me the way I wish I could right now. My concern also lies in whether I can have children of my own. I know physically natural birth is not possible. But I need to know that I will be able to have children of my own. I have always wanted and planned to adopt, but I want one of my own if possible.

I guess I am looking for some advice or stories from women with congenital myopathies and families. How did it impact their lives, health, marriage?

I welcome any input, ideas or support.

Thank you!


Krin Krin
6 Responses Sep 1, 2008

my three year old daughter fs cftd. not walking yet, started crawling last year and has a feeding tube. i worry about her future as well. to all the adults living with cftd.... when did you walk??? caylee is behind in speech and has developmental delays, but normal intelligence. did any of you experience this? please keep posting and try and stay positive. caylee is enrolled in alan beggs laboratory in boston. he is the leading the way in research for myopathies. check him out.take care.

I have CFTD and I am happy to have found others like me. I am 39 and feel my body slowing down also. I did carry a baby to term - he is 18 now and doing well. I would love to connect with you - I hope you are doing well.<br />
<br />
- Christine

Krin, I wish you and your man happiness. Any disability tends to hopelessness at times. I hope that you get everything you want in life!

Krin,<br />
<br />
I am living with this as well and I have some of the same concerns as you have. I am unsure about whether or not it is possible for me to go through a pregnancy and carry a baby for 9 months. I am also worried about passing it on to my children. I've been searching all over the internet and you seem to be the only person who has shared their story about having CFTD. I would like to correspond as well.<br />
<br />
- Alyssa

Hi Mustafa <br />
<br />
Our son has just been diagnosed with Congenital Fiber type disproportion. He is just over a month old. Currently he is in intensive care in hospital and on respiration support. At this stage we do not know the severity of his condition. I would like to correspond if that is OK. <br />
<br />
Take care

I would be happy to correspond also - myself and my son both have CFTD and would like to connect with others that understand.

Dear Krin,<br />
<br />
I am also suffering with this damn disease! I have found my soulmate and we have 2 children now. I would like to correspond with you if you also want.<br />
<br />
Take care,