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Scleroderma on Discovery Health Channel


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#1 Kamlesh

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Posted 11 February 2008 - 04:42 PM

Today around 6:30 PM pacific time, there was a program “Mystery Diagnosis” on Discovery Health Channel showing a patient with Scleroderma. It showed how difficult it was to diagnose the disease. They showed, so many doctors and tests it took to diagnose Scleroderma. In this case, the patient was diagnosed on her third year and after 9 months of extensive testing.

My personal observation is that, there is a need for lot more awareness about Scleroderma in medical community.

I had Scleroderma symptoms for almost seven years, before I was diagnosed. I was only third patient; my primary care had come across in her 15 years of practice.

I think it is really sad in the age of internet that there is so little awareness of the disease in medical community.
Kind regards,

Kamlesh


#2 janey

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Posted 12 February 2008 - 04:36 AM

Kamlesh,
Thanks for bringing this to our attention. I checked the guide and it looks like it is going to replay today and again on Sunday. The title of the Episode is "Fatal Secret". So check your local stations for the time.

I was one of the "lucky" one's that was diagnosed during year one. However, I do have to give myself a lot of credit for that because every time I developed a new symptom I was on the computer. Once my hands started changing (swollen fingers, clubbing, and tight skin) I bypassed the referral system and went to a hand doctor. She identified it as autoimmune and made me an appointment with a rheumatologist. That took two weeks and by then I knew I had scleroderma The rheumatologist confirmed it. It really taught me that MY health is MY responsibility. Two other doctors had totally ignored all my symptoms for months, attributing everything to age and weight. UGH! No one cares more about YOU than YOU.

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 Peggy

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Posted 12 February 2008 - 06:05 AM

I checked our local listing and unforuntately we don't get this program. It's nice to hear when something on this disease is going to be previewed and frustrating when you can't get it. Thanks though.

Warm hugs from Minnesota.

Peggy

#4 Michelle2

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Posted 12 February 2008 - 09:01 AM

Thanks for the info, I checked the Discovery Health channel on the net and on Sunday it is playing again at 11:00am. So you'll need to check with your local line up to see which channel its onin your area.
Take care and stay warm,

Michelle

#5 Snowbird

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Posted 12 February 2008 - 10:51 AM

Thanks Kamlesh and Janey....I'm going to look for those titles too...
Sending good wishes your way!

#6 Kamlesh

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Posted 12 February 2008 - 02:17 PM

Hi Janey,

Yes, credit goes to you. I have learned hard way that I HAVE to own my health. Now, I am on top of it, and many doctors are surprised how do I know so much about the disease (thanks to this group).

It is really sad to see many medical professionals know so little about the disease despite going through rigorous training for almost ten years.
Kind regards,

Kamlesh