Friday, September 2, 2011

Sjogren's Syndrome: It's a Hot Topic. Finally.

Image found here. 

With the announcement that Venus Williams was withdrawing from the U.S. Open tennis tournament yesterday due to health problems from Sjogren's syndrome, the sports and Sjogren's syndrome forums have been abuzz.

The discussion in the autoimmune online communities seem to focus on two points:

First, although other sjoggies feel sympathy that Venus has joined our ranks, we also are hopeful that her high profile will bring a new focus of interest in this disease, and in turn, more research dollars.

The second topic? Frustration in response to uninformed and incorrect media coverage.

I share the same viewpoints wholeheartedly, especially topic two. It's a seemingly never ending battle: that in spite of this disease being incredibly prominent with four million sjoggies at present, very few know what it's all about. Including medical professionals!

Sigh. Let's review once again, shall we? It's more than just dry eyes and mouth - for some it can cause debilitating fatigue, joint issues, and can affect the nervous, GI, kidney, skeletal, and liver systems, among other body systems. No, it doesn't ever go away. No, it can't be cured. Yet.

Even with celebrity status, it took SIX YEARS for Venus to be diagnosed. Average time from symptom onset to diagnoses for most sjoggies is six and one half years.

Do YOU want to know more about this potentially devastating autoimmune disorder? You can read more here and here.


ShEiLa said...

The more I learn... the easier it is to recognize that the problems I have had for years... they are all connected to auto-immune disease.


Christine said...

LOL...I just wrote a similar post this morning! I have a feeling it might be an uphill battle to get the CORRECT information out to the public by the media which bloggers are going to have to keep working hard! :-)

Kelly said...

As usual, you've hit the nail on the head, Julia.

I just had my dermatologist tell me yesterday she's sure I don't have Sjogren's because I'm not dry enough (where is she at night when the Sahara Desert is inhabiting my mouth?)and bloodwork is negative. Rosacea inflammation is causing both the dry eyes and dry mouth, she says. (First I've heard about Rosacea causing dry mouth) The swelling, pain and stiffness in my fingers every morning, particularly the index finger, is from too much knitting. I just need to knock it off with the knitting, take Oracea, vitamin C and B-complex and get 10 hours of sleep every night and things should be fine. Well, maybe she's right and maybe not. My primary care doc warned that negative blood test results do not guarantee it's not Sjogren's.

I'm so tired of worrying about whether or not it's Sjogren's and getting conflicting opinions that I am just going to pretend for a while that I don't have anything wrong and keep knitting away and playing a reasonable amount of tennis.

I hope Venus can find a way to come back to the game without damaging her health. Maybe she can still win a few more doubles titles with Serena if she can't make it back in singles. I wish her the best. She's shown incredible grace under pressure her entire career. I've always rooted for her whenever she's been on the court and am rooting for her more than ever off the court.

Amy Junod said...

I actually shouted at the tv when one reporter said that she didn't play because the disease caused fatigue. Fatigue? She didn't play in the US Open because of fatigue? The weakness was so bad she couldn't hold up her racket you numb-skull!
deep breath
Hubby and I were talking about her at lunch. When I first got my diagnosis the doc acted like my symptoms would be "a nuisance".
I hope that no one gave her such silly info.

Anonymous said...

Well said all of you!
Ditto times 1000!
~Fellow Sjoggie (took 7 years dx.)

PS Apparently yahoo health had a more sympathetic article written by a woman - a friend sent it to me about Venus!

wifeofanairman said...

I have Sjogren's as well. I am so thankful that it's finally being publicized. It's about time. I'm pretty sure my 10 year old daughter has it as well. I'm trying to teach her to keep living life to the fullest.

Great blog!