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Biomarker for Diffuse Scleroderma skin has been discovered!


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Anyone In NZ?


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#1 Liz

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Posted 26 March 2007 - 11:43 AM

Hello All

My sister who is 24 has Scleroderma, Lupus, Arthritis, Raynauds, Interstitial Lung Disease, GORD and muscle myopathy. I have posted this message as I know my sisters' aim in life is to be able to help others with chronic disease. She has designed alternative ways to excerise as she has not been able to do 'traditional' excercises and through healthy eating and excercise her health has done a 360 turnaround she is now participating in sports and can almost do those "traditional' excersies herself.

My sister first had symptoms when she was 15/16, it took years of different specialists for her to finally be diagnosed. She has been thru many ups and downs which I'm sure you will all understand. However she has the most amazing positive outlook, she always says "never give up there is always hope". The last couple of years she has been studying to be a Personal Trainer and is working in a gym in Auckland. The owner of the gym she is at is 100% behind her and her mission. If you would like to know more the name of the gym you can send me a private message.

#2 janey

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Posted 27 March 2007 - 04:16 AM

Liz,
Welcome to the ISN forum! I'm sorry that your sister is having to deal with so many different diagnosis but it sounds like her attitude and determination have given her a new life. Certainly an inspiration to us all. It's obvious that you admire and love her a lot.

Please keep us up on how she is doing and if you can convince her to join, it would be great to hear from her personally. I'm sure she would have some very encouraging words and experiences to share with the rest of us. Thanks so much for joining as her representative.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 Sweet

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Posted 27 March 2007 - 04:27 AM

Hi Liz,

Welcome to the sclero forums. I'm sure sorry your sister is ill. You will find a host of information, support and friendship here. It's nice that you are here to gather information for her as well. Maybe she'll feel like posting at some point too.

Looking forward to updates on her.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 monika

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Posted 29 March 2007 - 01:51 PM

Hi Liz

I'm a neighbouring Aussie, so not too far away. I've got systemic scleroderma and was only diagnosed in Oct 2005. It took my doctors a while to diagnose me too at 33. My moto is to keep fighting and am always on the look out for treatments and techniques. I believe for every disease there is a cure, we just have to find it.

Hang in there
Monika.