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Scleroderma sufferers want more understanding from GPs

10:11am Tuesday 19th February 2008

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LACK of understanding by GPs about scleroderma was one of the concerns raised by a survey of sufferers.

The scleroderma questionnaire was sent out by the Alsager-based Raynaud's and Scleroderma Association, which is led by its founder Anne Mawdsley.

Some 70 per cent of people responded to the questionnaire, with 1,050 of the 1,500 forms sent out being completed.

The main concerns raised by people were fear of the future, lack of understanding by GPs and junior doctors, frustration at not being seen by a scleroderma specialist and lack of counselling facilities.

"We're correlating the comments from sufferers, which will give doctors treating patients an excellent insight into people's feelings, how they perceive their care and understanding by health professionals, the service they receive and how they are treated," said Mrs Mawdsley.

"There were many positive comments which were encouraging, and others which indicated there is still room for improvement.

"It is hoped this information will be of value in improving services and care for patients in the future."

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Your Say Your Guardian

John, India says...
4:31am Fri 22 Feb 08

Why wait at a NHS clinic , reverse your disease at www.cidpusa.org


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John, India says...
4:31am Fri 22 Feb 08

Why wait at a NHS clinic , reverse your disease at www.cidpusa.org


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Jackie Baggett, USA says...
8:27pm Sat 23 Feb 08

I agree with John. My rheumatologist fussed at me last visit for feeling badly "for the entire four years he's been seeing me". Duh! Of course I do! And I doubt it gets better. Guess I'd better change Dr.s before he really gets sick of me. What a shame.

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Jackie Baggett, USA says...
8:27pm Sat 23 Feb 08

I agree with John. My rheumatologist fussed at me last visit for feeling badly "for the entire four years he's been seeing me". Duh! Of course I do! And I doubt it gets better. Guess I'd better change Dr.s before he really gets sick of me. What a shame.

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SHIRLEY MARTIN, says...
3:06am Mon 25 Feb 08

no Doctor inform about scleroderma in Simi Valley, Ca.

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SHIRLEY MARTIN, says...
3:06am Mon 25 Feb 08

no Doctor inform about scleroderma in Simi Valley, Ca.

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Patty Strickland, Tallahassee, FL says...
2:00pm Mon 25 Feb 08

My GP was not informed either, but I when I was diagnosed, we both did lots of research. We have worked together to "try" things that may or may not help, but the bottom line is, he is willing to work with me. There are excellent GP's out there. Keep looking!!

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Patty Strickland, Tallahassee, FL says...
2:00pm Mon 25 Feb 08

My GP was not informed either, but I when I was diagnosed, we both did lots of research. We have worked together to "try" things that may or may not help, but the bottom line is, he is willing to work with me. There are excellent GP's out there. Keep looking!!

Report this post »

Catherine Burke, Naples, Florida says...
5:53pm Mon 25 Feb 08

My mother lost her life to scleroderma eight years ago this month. I was diagnosed with scleroderma in March of 2004. I was recently fired from my job of seven years for calling in sick due to a flare up from the scleroderma. I filed charges with the Equal Employment Opportunity Commission but was informed on Friday that the case is being dismissed. They do not feel that I am protected under the American's with Disabilities Act due to the fact that I'm only disabled when I have a flare up and not on a daily basis. Talk about ignorance and people not understanding this disease.

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Catherine Burke, Naples, Florida says...
5:53pm Mon 25 Feb 08

My mother lost her life to scleroderma eight years ago this month. I was diagnosed with scleroderma in March of 2004. I was recently fired from my job of seven years for calling in sick due to a flare up from the scleroderma. I filed charges with the Equal Employment Opportunity Commission but was informed on Friday that the case is being dismissed. They do not feel that I am protected under the American's with Disabilities Act due to the fact that I'm only disabled when I have a flare up and not on a daily basis. Talk about ignorance and people not understanding this disease.

Report this post »

Renee Fontana, Sacramento, Ca says...
6:38pm Mon 25 Feb 08

No Dr.'s in Sac that are that are well enough informed about scleroderma morphea. Every Dr. that I've ever seen since I was diagnosed almost 10 yrs ago knows very little if anything about this disease. I've had to educate myself as well as the Dr.'s about this. this is very sad.

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Renee Fontana, Sacramento, Ca says...
6:38pm Mon 25 Feb 08

No Dr.'s in Sac that are that are well enough informed about scleroderma morphea. Every Dr. that I've ever seen since I was diagnosed almost 10 yrs ago knows very little if anything about this disease. I've had to educate myself as well as the Dr.'s about this. this is very sad.

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craig purser, ogden, utah says...
4:25am Tue 26 Feb 08

I have been diagnosed for 5 years now, 52 yr old male, in this area you need to do your own book work on the net and at this sight to stay up on the new meds. My doctors rarley have any new news or options, i bring them updates off the internet that they have not even heard of.so do your own work and never give up..hang in there

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craig purser, ogden, utah says...
4:25am Tue 26 Feb 08

I have been diagnosed for 5 years now, 52 yr old male, in this area you need to do your own book work on the net and at this sight to stay up on the new meds. My doctors rarley have any new news or options, i bring them updates off the internet that they have not even heard of.so do your own work and never give up..hang in there

Report this post »

Rita, Pa, USA says...
11:12pm Sun 2 Mar 08

I was born in India. Once I landed in US, 23 yrs back, started experiencing Raynaud's. Diagnosed with Scleroderma. fine in warm weather, got back from India...back to symptoms. unbelievable...goal to migrate for 6 months to India n 1 year.

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Rita, Pa, USA says...
11:12pm Sun 2 Mar 08

I was born in India. Once I landed in US, 23 yrs back, started experiencing Raynaud's. Diagnosed with Scleroderma. fine in warm weather, got back from India...back to symptoms. unbelievable...goal to migrate for 6 months to India n 1 year.

Report this post »

Ila, Northern California says...
2:54am Mon 3 Mar 08

I would be SO DEAD if I had continued taking all the 'recommended' medicines prescribed to me!! The FIRST THING I GOT RID OF WAS METHOTREXATE!!! THIS IS A CHEMO DRUG INVENTED FOR TREATMENT of Leukemia! Its a poison and can cause LUNG DAMAGE! OH YES...isn't that just what someone with lung fibrosis needs. It also causes hair thinning and teeth to fall out.
I had a GP try to give me Fosomax. The FIRST 'warning' with Fosomax is that one should not take it if one has digestive problems. So Esopheageal paralysis isn't included?? HA!
This same 'physician' ...also derided me once when I began crying in his office (I could barely walk), he said, "everytime I see you, you're depressed!" I do sympathize with Jackie, USA after having had this similar experience!
Anyway, I got a dr who is a 'less is best' and treats her patients like humans;she believes in combining holistic things such as fish oil and flax oils, vegetarian diets and LOTS of exercise. I also found a massage school...it's way cheaper than eating meat, and paying co-pays!

Report this post »

Ila, Northern California says...
2:54am Mon 3 Mar 08

I would be SO DEAD if I had continued taking all the 'recommended' medicines prescribed to me!! The FIRST THING I GOT RID OF WAS METHOTREXATE!!! THIS IS A CHEMO DRUG INVENTED FOR TREATMENT of Leukemia! Its a poison and can cause LUNG DAMAGE! OH YES...isn't that just what someone with lung fibrosis needs. It also causes hair thinning and teeth to fall out.
I had a GP try to give me Fosomax. The FIRST 'warning' with Fosomax is that one should not take it if one has digestive problems. So Esopheageal paralysis isn't included?? HA!
This same 'physician' ...also derided me once when I began crying in his office (I could barely walk), he said, "everytime I see you, you're depressed!" I do sympathize with Jackie, USA after having had this similar experience!
Anyway, I got a dr who is a 'less is best' and treats her patients like humans;she believes in combining holistic things such as fish oil and flax oils, vegetarian diets and LOTS of exercise. I also found a massage school...it's way cheaper than eating meat, and paying co-pays!

Report this post »

carol Smith, Irving, Texas says...
11:24pm Tue 1 Apr 08

I quite my rheumatologist and am going to my internal specialist doctor. My rheumatologist only took my blood and my urine every three months. My gastro first discovered I had CREST. Esophageal problems. My Eye Ear Nose dr. discovered I had Sjogrens Syndrome. When I had a sore on my finger from Raynauds that would'nt heal my rhemy said to put a bandaid on it. My internal dr. gave me meds to help my circulation. Since I have all sorts of problems with Scleroderma now after 20 years I had to ask my rhemy to put me in hydroxchloroquine. Since taking it for 3 years my mouth is getting smaller. Not sure I should be taking it at all so I am looking for another rhemy. The bottom line is -- read and keep informed and if you find a good doctor -- don't leave him. I am in the dallas/ft worth area and don't know a rhemy that has scleroderma patients. The one I went to was recommended -- but forget him.

Report this post »

carol Smith, Irving, Texas says...
11:24pm Tue 1 Apr 08

I quite my rheumatologist and am going to my internal specialist doctor. My rheumatologist only took my blood and my urine every three months. My gastro first discovered I had CREST. Esophageal problems. My Eye Ear Nose dr. discovered I had Sjogrens Syndrome. When I had a sore on my finger from Raynauds that would'nt heal my rhemy said to put a bandaid on it. My internal dr. gave me meds to help my circulation. Since I have all sorts of problems with Scleroderma now after 20 years I had to ask my rhemy to put me in hydroxchloroquine. Since taking it for 3 years my mouth is getting smaller. Not sure I should be taking it at all so I am looking for another rhemy. The bottom line is -- read and keep informed and if you find a good doctor -- don't leave him. I am in the dallas/ft worth area and don't know a rhemy that has scleroderma patients. The one I went to was recommended -- but forget him.

Report this post »

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