Sjogren's Syndrome is Common?

I sometimes mention Sjogren's syndrome, the main autoimmune syndrome I have. Sjogren's affects the moisture producing glands in the body, the classic symptoms are dry eyes and dry mouth. For some people, that is all they have, others may have a variety of other symptoms, but not have dry eyes or mouth at all. Some people are able to continue on with all their roles in life, others become completely disabled. There have been estimates that between 1-3% of the population of the US is affected by Sjogren's. That means that this disease, which so few people have heard of, and until recently was thought to be rare, is actually pretty common.

That means that there are many, many, MANY people out there who have Sjogren's syndrome, and don't know it. For some, it is because their symptoms are mild, or they blend in with something else they have, or they figure what they feel is just a normal part of aging. Then there are all the others. The ones who know there is something wrong, and are searching for a diagnosis. On average, it takes 5-7 years for people with Sjogren's to get an accurate diagnosis. People are often told they have lupus, or rheumatoid arthritis, both of which have some overlaps with Sjogren's. There is a blood test, but not everyone with Sjogren's tests positive. I could go on and on, but you get the idea. 

Unfortunately, treatment can be haphazard, or even inappropriate if you don't have an accurate diagnosis.Also, having a diagnosis is beneficial psychologically, in that you feel 'vindicated', that you didn't imagine the symptoms, they weren't all in your head. 

On June 1st, our Northeast Ohio Sjogren's Syndrome Support Group is having a Walkabout- a short walk, since many of us, (including me, these days) are limited in how much we can walk.We are collecting money for the Sjogren's Syndrome Foundation, which will go to sponsor research grants for researchers studying Sjogren's syndrome, looking to understand it better, and for better ways to diagnose and treat it. The funding will also go to educating the public as well as the medical community about Sjogren's, so people will be diagnosed more quickly in the future.

Please go to my Firstgiving page and make a donation to help us with our mission. My tear ducts and salivary glands thank you, as does the rest of me, and all the other people affected by Sjogren's.

From One Sheryl to Another

I got an email yesterday from someone asking for my help to raise money to pay for medical expenses for his partner. I don't normally post things like this here, but I had to post this. Her name is Cheryl (okay, so she spells her name wrong), she has Sjogren's Syndrome, Fibromyalgia, thyroid issues and a sister named Maria (my sister is Marcy-close enough). Here is his letter, along with the link to the youcaring.com page where you can read more about Cheryl and her ordeals, and donate as well, even if your name isn't S(C)heryl. Youcaring is a site where individuals and causes can set up a fund-raising page to raise money fee free.

Hi,

Sorry to write at this address. I ran across your blog and was wanted to know if you could help me. My partner Cheryl has been diagnosed with sjogren's syndrome, IgA deficiency, fibromyalgia, and secondary adrenal insufficiency. She also has had to have her thyroid ablated. The history of how we came to these diagnoses is long and complicated. The short story is that she hasn't had much success with traditional doctors, but about a year ago she started seeing a alternative medical care doctor who specializes in classical Chinese medicine.  His treatment as well as some dietary changes (eliminating wheat gluten for one) have helped her tremendously. Prior to this treatment she was bed-ridden because of the pain all over her body and was loosing weight.

The reason I am writing is that these treatments are not covered by insurance forcing us to pay out of pocket. Because we cannot afford these treatments I have started a fund-raiser to help pay for the treatment. We have already reached out to friends and family and have used Facebook to raise funds, but I have found that I need to reach out further. My request of you, if you can, is to post a link to our fundraiser on your blog to try to help spread the word. I don't have a Facebook page myself and am not good at social networking. Here is the link to our fund-raiser and gives a more complete story:

http://www.youcaring.com/medical-fundraiser/cheryl-s-medical-fund/40186

By the way we live in Portland Oregon with two children (twins!)

Thanks for taking the time to look at this.

Barry