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Hi Elaine,
I too am a
patient of Dysferlinopathy. I come from
The problem
chart is very much similar for me as well:
- Problem in standing on Toes (age 21)
- Problem in climbing stairs. (age 21)
- Inability to climb stairs (age 23)
- Problem in getting from chairs (age 23)
- Inability to get up from chair (age 24)
- Weakness in hand muscles (age 26)
- Weakness in back (age 26)
- Inability to get up, when laying (age 27)
Luckily I
decided upon a profession (Software Engineer) which does not involve physical
work at all. But I do require help getting up from chairs/walking on ramps. I
usually carry a stick along with me, but prefer using a wheel chair (when going
to crowded places).
Just to
end, I would like to add the words of a senior person (aged 60), struggling
with a simillar disease. He once motivated me by saying “The day you lose
to yourself, you’ve lost to life. Keep strugling and you’ll start
enjoying it”.
Regards,
KK Saxena
Software Engineer,
Infosys Technologies
Ltd, Pune.
Direct Dial:
020-398-16659 | Cell No: 91- 9225614444
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-----Original Message-----
From: notify@yahoogroups.com [mailto:notify@yahoogroups.com] On Behalf Of ebd197
Sent: Sunday, June 28, 2009 12:39 AM
To: Keertee Kumar Saxena
Subject: greetings from
Hi Saxena,
can you tell me what kind of myopathy you have and when it all started
for you.
I am 35 and have just been diagnosed with Myopathy. It's the
dysferlin gene with me and i have to have more blood tests done. i first
noticed something was wrong when i was 24. i kept it from my family for
many years but there is only so much hiding you can do. I was terrified
of it being MS. I have very week legs and now it's in my arms and
back. Do you do any exercise that helps? over here they don't know if
exercising makes it worse or not. My biggest fear is of it spreading and getting
worse. I would love you hear your story and how long you have it etc.
Over here in
I Hope to hear from you soon.
Elaine.
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