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Walking on toes with scleroderma


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6 replies to this topic

#1 ashu

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Posted 14 January 2009 - 07:35 PM

Hello,

My daughter who has scleroderma since 5 years old, she is walking on her toes. She can walk only for 10 steps. She used to run around and participate in running competition until 1 year ago. Can anybody as well as sclero expert give suggestions? It would be a great help if my daughter walks around with anybody's suggestion. More than her disease walking on toes is a mental agony for me.

With regards

m/o ashu

#2 Jeannie McClelland

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Posted 15 January 2009 - 06:13 AM

Dear Ashu,

Does your daughter get physical therapy? Sometimes that can work miracles. Have you talked to her doctors about that?

I'm really sorry for her, and for you. It's got to be awfully hard on you. Take care of yourself, too.

We have a page on Skeletal involvement, which includes muscles, joints, bones~ If you click on the underlined word, it will take you to that page. There might be an article there that would help you.

You don't say where you are from, but we also have information available in other languages. At the top of most pages is a list of countries. That might be helpful to you, too. (I ask this because I had an Indian friend named Ashutosh.)

Best wishes and let us hear from you again,
Jeannie McClelland
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#3 Snowbird

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Posted 15 January 2009 - 10:45 AM

Hi Ashu

Sorry, I don't have any advice on this one...but Jeannie has a good suggestion with physical therapy....it must be so hard on you both...let us know what her doctor thinks about it too ok. Take care.
Sending good wishes your way!

#4 Amanda Thorpe

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Posted 15 January 2009 - 01:53 PM

Hello Ashu

I am 40, have diffuse SSc and in the early stages walked on my toes because it was less painful than using the whole foot. Now I have foot padding loss and flexability loss in the ankles so I can't walk on the ball of my foot anymore.

Could it be a comfort issue for your daughter?

Take care.

Amanda
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#5 ashu

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Posted 19 January 2009 - 02:02 AM

Hello Jeannie Mc Clelland,

Thank you so much for your reply . I am from India staying in Andhrapradesh near to Hyderabad. Her doctor says we need to give physiotherapy she has painful ulcers over the joints because of that it is difficult to flex the limbs. Can you help me, one of the doctors name you mentioned if possible I can take his appointment.

Thanking you so much.
m/o ashu

#6 epasen

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Posted 19 January 2009 - 04:11 AM

Hi ashu!

I was diagnosed when I was only 6 years old (now I'm soon turning to 19) and my condition was excellent for 11 years. During the last couple of years my left ankle has started to get really tight and it's hard for me since I do ballet and other dances a lot.

I don't know about your daughters condition any better but you could try gentle massage. I've heard (and tried a lil too) that it can make the skin less tight temporarily for a day or two. I bet that it won't do any bad either.. At least it could be a worth of a try?

Take care,
Emmi

#7 Jeannie McClelland

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Posted 21 January 2009 - 06:15 AM

Hi Ashu,

I'm sorry it took me so long to reply to you, I have been away.

Your daughter's doctor might be able to recommend a physiotherapist that he already works with. I did a quick web search on "hyderabad physiotherapy" and it would appear there are a lot of rehabilitation clinics in the Hyderabad area. Your doctor might be able to suggest one that has experience with scleroderma.

Have you looked at our International Support Groups page?.

We also have a link to the Scleroderma Clinical Trial Consortium in India and Pakistan that might also be able to offer you help or advice.

I hope some of this helps. Best wishes to you and your daughter. Let us know how things go.
Jeannie McClelland
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