Does anyone know why Rheumys manages Weggies?

[marta]

Thanks that makes it very clear Rose. I was told that my main treatment doctor will be the rheumotologist and he would call on other specialusts as required. Sounds like a specialists nightmare when so many parts of the body can be involved.

From AARDA (American Autoimmune Related Disease Association AARDA) "Unlike cancer, which is an umbrella category for a range of diseases (leukemia, breast cancer, prostate cancer, non-Hodgkin’s lymphoma, et al.), autoimmunity has yet to be embraced by the medical community (and the public) as a category of disease. Because these diseases cross the different medical specialties, such as rheumatology, endocrinology, hematology, neurology, cardiology, gastroenterology, and dermatology, and because such specialties usually focus on singular diseases within their particular category, there has been virtually no general focus on autoimmunity as the underlying cause. It has been estimated that autoimmune diseases cost $86 billion per year."

and

"Autoimmune Disease …faces critical obstacles in diagnosis and treatment.
• Symptoms cross many specialties and can affect all body organs.
• Medical education provides minimal learning about autoimmune disease.
• Specialists are generally unaware of interrelationships among the different autoimmune diseases or advances in treatment outside their own specialty area.
• Initial symptoms are often intermittent and unspecific until the disease becomes acute.
• Research is generally disease-specific and limited in scope. More information-sharing and crossover among research projects on different autoimmune diseases is needed."

This is why I'm doing PJ Day... this is a huge problem and someone other than a single organization in the US needs to address it. Who better than people who understand the problem?
Wear your PJ's Friday and let's show them all we're not taking it anymore.

BTW Alisson, it was a total pleasure meeting you and Colin this month.
Three Weggies in one room.
That was pretty cool from my perspective. Rini was totally stoked too.
I look forward to more meetings and some sick tree skiing next year.

[pberggren1]

Every day is PJ day for me.......

[ingemlb]

yes that is what I am learning. Everyone works in a box with blinkers on And you are right ... there ought to be an Autoimmune Disease Specialist. There is a LOT of research into Autoimmune disease but it's not hitting the medical professionals not even hitting Universities from what I gather. My Rheumatologist is also an Immunologist. Does that make him closer to the area?
I am just happy that each of the specialists I saw got me with the diagnosis of Wegener's already in place and that every one of them seemed to have come across someone with Wegener's albeit at the rate of one a year at most. My Gastroenterologist seemed totally not worried about the state of my bowels or my stomach ulcers but shrugged her shoulders and said "it's All Wegener's" so I have to hope that the Rheumatologist has chosen the best treatment and that when I get all these organs retested in 6 month's time there is some improvement.
Yes ... me too Phil. Every day is PJ day but only my husband gets to see them lol. I am still not game to venture forth outside at this stage. Inge.

[Allisonquast]

From AARDA (American Autoimmune Related Disease Association AARDA) "Unlike cancer, which is an umbrella category for a range of diseases (leukemia, breast cancer, prostate cancer, non-Hodgkin’s lymphoma, et al.), autoimmunity has yet to be embraced by the medical community (and the public) as a category of disease. Because these diseases cross the different medical specialties, such as rheumatology, endocrinology, hematology, neurology, cardiology, gastroenterology, and dermatology, and because such specialties usually focus on singular diseases within their particular category, there has been virtually no general focus on autoimmunity as the underlying cause. It has been estimated that autoimmune diseases cost $86 billion per year."

and

"Autoimmune Disease …faces critical obstacles in diagnosis and treatment.
• Symptoms cross many specialties and can affect all body organs.
• Medical education provides minimal learning about autoimmune disease.
• Specialists are generally unaware of interrelationships among the different autoimmune diseases or advances in treatment outside their own specialty area.
• Initial symptoms are often intermittent and unspecific until the disease becomes acute.
• Research is generally disease-specific and limited in scope. More information-sharing and crossover among research projects on different autoimmune diseases is needed."

This is why I'm doing PJ Day... this is a huge problem and someone other than a single organization in the US needs to address it. Who better than people who understand the problem?
Wear your PJ's Friday and let's show them all we're not taking it anymore.

BTW Alisson, it was a total pleasure meeting you and Colin this month.
Three Weggies in one room.
That was pretty cool from my perspective. Rini was totally stoked too.
I look forward to more meetings and some sick tree skiing next year.

We we loved meeting you all too and look forward to future visits ! You too Riny,we may just come to Indianapolis! Hugs to you both !

[RudiK]

My primary WG doc is a Nephrologist since the WG severely damaged my kidneys, I also see a Neurologist due to sever nerve damage in my feet, legs and finger tips. My PCP is an Internist, she is also the one that recognized the illness after I "wandered for one year in the wildernist".

[Lilly]

In my case, 24 yrs ago, it was because the main issue I was having was arthritis. It was moving from place to place on my body at first. But right before I was diagnosed, I had arthritis in every joint of my body. A lot of Autoimmune diseases have arthritis as a beginning symptom, so rheumatologists usually have knowledge of a lot of autoimmune diseases. So other Drs, like EENT's, Pulmonaries, and kidney drs. usually ask them to help diagnose their pt. if they are experiencing arthritis, along with other problems. That's how it happened to me. :-)