Sjogren's Syndrome

I have several chronic illnesses. Sjogren's in one of them. With this syndrome though, my blood work may come back great, but I still have the extreme dry eyes, dry mouth, dry throat, joint pain and awful fatigue.

I'm blessed to have a rheumatologist and opthomologist who have diagnosed me based on my symptoms and treat these symptoms to make me as comfortable as possible.

I have tear duct plugs, use artificial tears and gel, am on a prescription called Restasis for my dry eyes, visit my dentist every 3-4 months, brush my teeth 3 times a day, floss as often as I can, use a calcium tooth paste that remains on my teeth at ntight, and have my eyes checked regularly. My rhuemy sees me every 3 months and although I also have Rheumatoid Arthritis which is under control, helps me to deal with the joint pain.

Having doctors that you can partner with, that listen to you and keep abreast of the latest research is essential to your health. Be proactive in your health care!

April has been designated Sjogren's Syndrome Awareness Month. This is an important time to share our stories about this disease with others. I hope that you will join me in getting the word out. Any time is the right time!

Feel free to post your comments or questions here. Please visit, join and donate to the Sjogren's Syndrome Foundation. This group is in the forefront of getting funding for research and educating people especially doctors.

The Sjogren's Syndrome Foundation is a 501(c)(3) tax-exempt national voluntary health agency. Founded in 1983, the SSF provides patients practical information and coping strategies that minimize the effects of Sjögren's syndrome. In addition, the Foundation is the clearinghouse for medical information and is the recognized national advocate for Sjögren's syndrome.

The Foundation's mission is to educate patients and their families about Sjögren's syndrome, Increase public and professional awareness of Sjögren's syndrome and Encourage research into new treatments and a cure.

Getting diagnosed with Sjogren's is often a battle. It can take up to 7 years or even more to show up in your blood work however that doesn't mean that symptoms don't start to affect your body until then.

Here's some of the symptoms that go along with Sjogren's:

*Dry eyes sometime having a sandy or gritty feeling in them
*Dry mouth even after drinking water
*Difficulty chewing or swallowing
*Sore or dry throat
*Sore, burning or cracked tongue and/or lips
*Dry nasal passages
*Joint pain
*Digestive problems
*Extremely dry skin, sometimes itchy and even cracking open
*Loss of difference in sense of taste
*Fatigue
*Dental decay even if caring for your teeth correctly

There are many different ways to treat or minimize these symptoms. Different doctors will be involved with your care. If you are diagnosed with Sjogren's or even Sicca (dryness) it is very important to let all of your doctors know about this.

Some prescriptions or over the counter meds can worsen your symptoms. You may need to make some changes in your diet too. Although there isn't a cure there are ways to make you feel more comfortable. Be sure to tell your doctors about what's bothering you instead of suffering in silence.

Governor Charlie Crist signed a proclamation observing April as Sjogren's Awareness Month in the state of Florida on March 29, 2007.

A note about Sjögren's Syndrome Awareness Month from the CEO of the Sjögren's Syndrome Foundation:

April is Sjögren's Syndrome Awareness Month and each year the Foundation chooses a theme and focus for our national awareness campaign. This year, our theme is Research - Our Hope for the Future.

The awareness campaign is simple: we are asking each member of the Foundation to consider mailing informational letters we provide you to six of your friends and/or family members. By doing this, you will be helping to increase knowledge about Sjögren's syndrome, as well as helping the Foundation to make Sjögren's syndrome a household name.

If you are already a member of the Foundation, then in April you will receive a Research - Our Hope for the Future kit in the mail. This kit will contain six letters for you to send to family and friends that will educate them on Sjögren's syndrome, and focus on Sjögren's syndrome research. It will also ask the recipient to consider making a gift to the Sjögren's Syndrome Foundation. But remember, whether or not they give a gift, the most important part is that we are educating people on Sjögren's syndrome.

What is unique about this year's awareness campaign is that it is focusing on research and the need for more funding. With this in mind, and as a way to recognize your efforts in helping us, we are awarding one of you a 2009 Student Research Fellowship named in your honor! (i.e. "The Mary Smith 2009 Student Fellowship")

All you have to do is mail all six letters and then send us the Summary Report letting us know that you helped to increase awareness, and you will have a chance at winning a grant named in your honor. Detailed information and instructions for entry will be included in the awareness kit you will receive in early April.

If you have any questions about our campaign please do not hesitate to contact the Foundation office at 800- 475-6473. All members of the SSF should receive their kit in the mail. If you have not received your kit by the beginning of April, or if you are not a member but would like to help raise awareness, contact the Foundation office.

Good luck and remember that it is critical all of us help spread the word about Sjögren's syndrome. Together, we will make Sjögren's a household name!

Sincerely,

Steven Taylore's signature
Steven Taylor
Chief Executive Officer

People with Sjogren's often have sensitive eyes especially out in the sun. Wearing sunglasses with good UV protection is important.