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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 naina

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Posted 13 September 2014 - 07:48 AM

Hi Joelf

 

I am Naina a software engineer from India, I was diagnosed with scleroderma at the age of 17  and am now 24. I am under treatment since then, my condition is pretty stable now. Usually I read the scleroderma posts and help myself out then I saw this site which is quite helpful to me. Could you suggest anyway with day to day routines that should be followed which can still improve my health?

 

Regards,

Naina.... :)



#2 Joelf

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Posted 14 September 2014 - 04:40 AM

Hi Naina,

 

Welcome to these forums and I'm pleased to hear that your condition is more stablised now.

 

I've included a link to our medical page on Coping Strategies which I hope you'll find interesting and helpful. We also have a thread in our Fun and Friendship forum, Support for the Tough Times which does include lots of useful advice and tips.

 

I'm sure you will find lots of support and encouragement from our members.

 

Kind regards,


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#3 Sweet

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Posted 15 September 2014 - 12:09 PM

Hi Niana,

 

Welcome! I'm so happy you found us, and that the site is proving to be a positive experience for you. Jo provided you with a few good links, I hope you find them helpful.


Warm and gentle hugs,

Pamela
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#4 Amanda Thorpe

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Posted 16 September 2014 - 12:24 PM

Hello Naina

 

Welcome and I am glad you have found this site helpful, that's our aim!

 

I can't help but think that you could probably give a tip or two about how to live successfully with scleroderma, having done so for so long yourself.

 

We have lots of videos you might find interesting, as well as our blogs, written by people with scleroderma and the carers of. 

 

I can certainly say that being involved with others who have and therefore know this disease is live changing, for the better. Keeping in contact with people is important as is having a routine, whatever it may be. A sense of humour is vital, you need to be able to laugh, especially at yourself, if you're going to survive with yourself intact.

 

Take care and keep posting.


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#5 miocean

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Posted 18 September 2014 - 11:39 PM

Hi Nana,
Good dental care is very important to maintain your teeth. Practice daily hygiene and see your dentist regularly for cleanings. Try to help him/her learn about scleroderma and the changes to the mouth so if your disease progresses and your mouth becomes smaller your will still have good dental care.

Keep copies of every lab and test you have in an organized method that works for you. Don't rely on your records being passed from doctor to doctor. Bring them with you to each visit.

Learn to adapt as needed. You may find you are not able to do everything you once did but with adjustments you can still do a lot. For instance, sitting down to chop vegetables for dinner instead of standing can help you not get as tired.

Don't be afraid to ask for help. This is still a hard one for me. Let others know when you need help doing things.

It's ok to say no. If you are too tired and can't manage something let them know that is not that you don't want to do it but you can't.

Plan downtime before and after periods of a lot of activity. Work this into your schedule. Try not to push yourself to the point of not being able to do something you really need or want to. ( I need to work on this one. )

Try to exercise, even simple stretches. The better shape you are in the better you will be able to deal with things and it helps with stress.

Learn as much as you can about your disease but don't get overly consumed and become your disease.

Develop a good support network. Family and friends should understand a little about what you are going through. You may find that some people can't handle it and that may disappoint you but try to understand it is them and not you.

Keep a positive attitude. It's okay to get down but if you find things overwhelming it is helpful to find a good therapist to get you through the rough spots.

These little things have helped me and I still need to work on them. I hope your disease remains stable.

miocean
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