Today I was lucky enough to stumble across Rheumatology News, a website devoted to research articles of the different rheuamtic diseases. I was pleased to find that they have a section on Lupus and Connective Tissue Diseases. While hunting there, I found this article, whose author believes that MCTD is a subset of scleroderma. While I would love to say that the author is wrong, I believe that she is correct. I have told several people in the past that I see more Scleroderma symptoms in my daughter than Lupus symptoms. She has significant hand involvement; her hands are very affected by Raynaud's, arthritis, Scleroderma features (including the sclerodactyl look.) Her wrists have been affected by Scleroderma in the past, also. She has had some issues that I don't know how to classify, or how to attribute. While I don't put a whole lot of stock into research anymore because much of it turns out to be wrong, I also know that this is far from a fully- proven piece, and there is a lot of research needed to explore this theory deeper, it is something interesting to think about. What I'm really hoping is that this research will get more funding for some of the diseases in this spectrum.
This is what I remember reading when we heard the words "Mixed Connective Tissue Disease" for the first time. "Some studies have found that patients who originally were diagnosed with MCTD often over time develop predominantly the features of one disease (such as Scleroderma or Lupus)", writes Coburn Hobar, and Arnold Postlethwaite. (See footnote).
The Lupus Foundation seems a little confused on the matter, but this is still a good comparison between Lupus, RA, Scleroderma, Ssc,Vasculitis, the Myositis diseases and Sjogrens.
While looking for statistics, I found this awesome slideshow, presented by Janet Pope for the 2006 Scleroderma National Conference. While a bit incomplete on a few slides, overall it is excellent for anyone that does not have a basic knowledge of Scleroderma, Lupus, RA, MCTD or Poly & Dermatomyositis.
My searching wasn't only limited to MCTD today. I was first led to an article on Rheumatology News called "New Anti-Inflammatory Drugs Will End Anti-TNF Dominance., (by one of my Dermatomyositis board mom's) and then I found this article on a new study drug that is showing strong promise for psoriasis. It does not mention psoriatic arthritis, but I imagine if the drug is similar to Enbrel that it will likely work for PsA.
*Coburn Hobar, M.D., Rheumatology
Fellow, and Arnold Postlethwaite, M.D., Professor of Medicine
and Director, Division of Connective Tissue Diseases, University
of Tennessee Health Science Center, Memphis, Tennessee, and
Department of Veterans Affairs Medical Center, Memphis, Tennessee
(originally published in "Scleroderma Voice," 2003 #1)
Showing posts with label Autoimmune diseases; Lupus; mixed connective tissue disorder; MCTD. Show all posts
Showing posts with label Autoimmune diseases; Lupus; mixed connective tissue disorder; MCTD. Show all posts
Monday, July 2, 2012
Friday, January 6, 2012
How can we change things?
It's been a while since I asked this question, but this week it has weighed heavily on me. How can we change the image of arthritis, the way that people perceive it? I truly think that the autoimmune forms need to be called something other than arthritis. Often, arthritis is a symptom of the disease, not the disease itself. I find myself wondering why they decided to call the autoimmune forms arthritis? Consider this: If I told you that my daughter had an illness that was chronic, that caused her body to attack itself from virtually any angle, that it can (potentially) cause many different ailiments such as inflammation of the linings of the heart and lungs, can cause liver and kidney failure, can cause seizures and demylenation of the brain (in some forms), as well as render her unable to walk because it attacks her joints and muscles, would you take it more seriously than my saying "Oh, she has Juvenile Arthritis"? Even when I say things like, "She has MCTD, like a sister to Lupus, & Dermatomyositis, which is rash & muscle inflammation so severe that it can destroy muscle tissue", people don't get it. The serious nature of the diseases that fall under this umbrella are deemed unimportant simply because they contain the word "ARTHRITIS", which people associate more with their grandparents than my little people.
In many ways, this is an exciting time to have arthritis, if you really have to be afflicted by it. (Humor me; I'll get to why in a bit.) For one thing, there are many children that are affected. About 300,000 children. There are more children affected by arthritis than children affected by Juvenile Diabetes, Sickle Cell Anemia & Cystic Fibrosis combined. One would think that there would be more awareness. Could it be because even many of the parents of these children underestimate this disease? I think that is true for many. There is a large percentage of kids that are "pauci" (less than five affected joints) and a good percentage of "poly" (5 or more affected joints). Many of those kids do well with just an NSAID, or an NSAID and Methotrexate. Some kids need a little bit more, and they have Enbrel or Humira added. And many of them are still able to function at the same level as their peers. They can still play soccer, dance, jump and play just like their friends. And then there are the kids that don't seem to respond to treatment. The doctors can't get them under good control. These kids miss a LOT of school. Many of them are on steroids, and have the terrible side effects that come with them. These kids don't have the same quality of life as their friends, and they are often perpetually sick. Most of them have daily pain. Some of them have had daily pain for so long that they don't even notice it anymore. It's just something that they have learned to live with. And the adult sufferers seem to tell a similar tale. How is that acceptable? Why don't we have a cure yet?
When you tell someone that your child has arthritis, you get some crazy looks. You get a ton of unnecessary advice. People think that you just haven't tried a healthy enough diet, or that you have done something wrong. "You don't really need all of those medicines. Why don't you just drink a bazillion gallons of prune juice every day? That will do it.". Ummmm...... no. It really won't. Lately, the people that are getting diagnosed are getting angry. They are so thrilled to have a name for it, only to find that no one takes "it" seriously. They are pissed. They feel robbed, and they're tired of being made to feel like they are just exaggerating their pain, or they are wimpy and weak. Finally, because of the wonder of the internet, people are banding together in an effort to create change. Not Obama's change, but they are demanding that they be taken seriously. WE are demanding it.
My huband's grandmother is still alive. She is almost 94. She was diagnosed with Rheumatoid Arthritis (which we shall now refer to as either Autoimmune Arthritis or Rheumatic Arthritis Disease) when she was only 19. Being around 1918, I imagine that she had RA for a long enough time period before she was diagnosed to likely have qualified for a Juvenile Arthritis diagnosis. She has suffered for many years. Suffered. People didn't have the resources then to storm the AMA and demand change. They weren't able to enlist 11,000 of their closest RA friends like Kelly, the RA Warrior. They didn't have the ability to create and find massive audiences to help with creating non-profits like Kelly with her new non-profit, the Rheumatoid Patient Foundation., or like Tiffany. When she was diagnosed, she was so happy to have a name... until she saw how people didn't take it seriously. Tiffany recently created the International Autoimmune Arthritis Movement. Patients are tired of feeling like they need to hide. Why should they have to? They are far from lazy, weak or anything else that people may call them. They require help. It's a disease. Not caused by wear-and-tear, but a disease.
We are pleased to have a new force that has recently risked her career to "come out" about her RAD. Christine Schwab recently published her third book, "Take Me Home from the Oscars: Arthritis, Television, Fashion, and Me. She is also "scheduled to appear on a segment of The Doctors, which airs January 13th on CBS. Check your local listings for times. Hope, JA Kids, and good information. Share the new for arthritis awareness!" My parting point is a copy of one of her posts on Facebook. She does have an excellent point that has me thinking that I need to re-evaluate my position, but for now I stand firm. Christine says: "I am posting this on both my pages because I feel it's important.
MY OPINION ONLY!
I know there is a lot of talk about changing the name of RA to RAD. I understand. I have RA and when someone says to me "oh I have arthritis too in my pinky finger" I want to scream. This is why I am working to change the stigma of arthritis. But coming from a media world I don't agree with changing the names of the arthritic diseases. When I first started on my campaign to remove the stigma in May of last year I was all for giving arthritis a new name. Now I know that is not the way, at least for me and the media. I want to simplify arthritis. Make it a "Readers Digest" definition of what arthritis is and isn't. So because I don't post and forward this campaign doesn't mean I am not supportive. I simply have a different approach that so far is working. I support everyone and everything in arthritis. We are misunderstood and underrated. But that is changing. Our community knows all the various diseases. Most of us understand them but we now need the public to be on our side. To understand. These are my goals." Well said, Christine. As long as we're all fighting together, it doesn't matter if we don't all always agree. We appreciate having more people joining the cause.
In many ways, this is an exciting time to have arthritis, if you really have to be afflicted by it. (Humor me; I'll get to why in a bit.) For one thing, there are many children that are affected. About 300,000 children. There are more children affected by arthritis than children affected by Juvenile Diabetes, Sickle Cell Anemia & Cystic Fibrosis combined. One would think that there would be more awareness. Could it be because even many of the parents of these children underestimate this disease? I think that is true for many. There is a large percentage of kids that are "pauci" (less than five affected joints) and a good percentage of "poly" (5 or more affected joints). Many of those kids do well with just an NSAID, or an NSAID and Methotrexate. Some kids need a little bit more, and they have Enbrel or Humira added. And many of them are still able to function at the same level as their peers. They can still play soccer, dance, jump and play just like their friends. And then there are the kids that don't seem to respond to treatment. The doctors can't get them under good control. These kids miss a LOT of school. Many of them are on steroids, and have the terrible side effects that come with them. These kids don't have the same quality of life as their friends, and they are often perpetually sick. Most of them have daily pain. Some of them have had daily pain for so long that they don't even notice it anymore. It's just something that they have learned to live with. And the adult sufferers seem to tell a similar tale. How is that acceptable? Why don't we have a cure yet?
When you tell someone that your child has arthritis, you get some crazy looks. You get a ton of unnecessary advice. People think that you just haven't tried a healthy enough diet, or that you have done something wrong. "You don't really need all of those medicines. Why don't you just drink a bazillion gallons of prune juice every day? That will do it.". Ummmm...... no. It really won't. Lately, the people that are getting diagnosed are getting angry. They are so thrilled to have a name for it, only to find that no one takes "it" seriously. They are pissed. They feel robbed, and they're tired of being made to feel like they are just exaggerating their pain, or they are wimpy and weak. Finally, because of the wonder of the internet, people are banding together in an effort to create change. Not Obama's change, but they are demanding that they be taken seriously. WE are demanding it.
My huband's grandmother is still alive. She is almost 94. She was diagnosed with Rheumatoid Arthritis (which we shall now refer to as either Autoimmune Arthritis or Rheumatic Arthritis Disease) when she was only 19. Being around 1918, I imagine that she had RA for a long enough time period before she was diagnosed to likely have qualified for a Juvenile Arthritis diagnosis. She has suffered for many years. Suffered. People didn't have the resources then to storm the AMA and demand change. They weren't able to enlist 11,000 of their closest RA friends like Kelly, the RA Warrior. They didn't have the ability to create and find massive audiences to help with creating non-profits like Kelly with her new non-profit, the Rheumatoid Patient Foundation., or like Tiffany. When she was diagnosed, she was so happy to have a name... until she saw how people didn't take it seriously. Tiffany recently created the International Autoimmune Arthritis Movement. Patients are tired of feeling like they need to hide. Why should they have to? They are far from lazy, weak or anything else that people may call them. They require help. It's a disease. Not caused by wear-and-tear, but a disease.
We are pleased to have a new force that has recently risked her career to "come out" about her RAD. Christine Schwab recently published her third book, "Take Me Home from the Oscars: Arthritis, Television, Fashion, and Me. She is also "scheduled to appear on a segment of The Doctors, which airs January 13th on CBS. Check your local listings for times. Hope, JA Kids, and good information. Share the new for arthritis awareness!" My parting point is a copy of one of her posts on Facebook. She does have an excellent point that has me thinking that I need to re-evaluate my position, but for now I stand firm. Christine says: "I am posting this on both my pages because I feel it's important.
MY OPINION ONLY!
I know there is a lot of talk about changing the name of RA to RAD. I understand. I have RA and when someone says to me "oh I have arthritis too in my pinky finger" I want to scream. This is why I am working to change the stigma of arthritis. But coming from a media world I don't agree with changing the names of the arthritic diseases. When I first started on my campaign to remove the stigma in May of last year I was all for giving arthritis a new name. Now I know that is not the way, at least for me and the media. I want to simplify arthritis. Make it a "Readers Digest" definition of what arthritis is and isn't. So because I don't post and forward this campaign doesn't mean I am not supportive. I simply have a different approach that so far is working. I support everyone and everything in arthritis. We are misunderstood and underrated. But that is changing. Our community knows all the various diseases. Most of us understand them but we now need the public to be on our side. To understand. These are my goals." Well said, Christine. As long as we're all fighting together, it doesn't matter if we don't all always agree. We appreciate having more people joining the cause.
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