Sjogren's Conference at Baylor University

There is going to be a Sjogren's conference this weekend at Baylor University in Texas.  Since I'm located super far from Texas, I won't be able to attend.  Hopefully some other Sjoggies out there will be able to join and report back to the rest of us.

The other good new is that Baylor has recently opened its own Sjogren's Center that includes includes rheumatology, otolaryngology, dental medicine, and ophthalmology.  It joins the University of San Francisco, the University of Pennsylvania, Johns Hopkins University, and the National Institutes of Health which each have a Sjogren's Center or Clinic.  Every center offers a slightly different model in terms of the specialties of the physicians that practice there.

The purpose of these centers to provide a more comprehensive, multidisciplinary, and coordinated level of care to patients--a one stop shop for your most of your Sjogren's needs.  While nothing in medical care is ever quite that simple, the idea of having doctors located in the same hospital who focus on Sjogren's makes quite a lot of sense to me.  I do hope more of these centers start to emerge.  It will mean that more attention and funding is being given to Sjogren's, that physicians are focusing seriously on the disease, and those with Sjogren's will hopefully be diagnosed earlier and get better care.  Let's hope this is a growing trend!

Sjögren's syndrome conference at Baylor College of Medicine Oct. 27

HOUSTON -- (October 16, 2012) -- Learn more about Sjögren's (SHOW-grins) syndrome at the inaugural Sjögren's Syndrome Conference at Baylor College of Medicine Oct. 27. The conference will be held at the Lee and Joe Jamail Specialty Care Center, 1977 Butler Blvd., Houston, TX 77030, room E4.125. The event is from 9 a.m. to 1 p.m. ending with a question-and-answer session with lecturers.

Since this disease has a wide range of symptoms, experts from more than five different specialties will be on hand presenting background information, as well as current research surrounding their field related to the disorder.

There will also be a presentation about the new Sjögren's Syndrome Clinic at BCM, which began seeing patients this summer.

Sjögren's syndrome is a disorder of the immune system that causes white blood cells to attack moisture-producing glands throughout the body. Symptoms include dry or burning eyes, dry mouth, difficulty swallowing, peeling lips, increased dental decay and vaginal and skin dryness. People frequently experience severe fatigue and joint pain and many patients have involvement of other organs, including the lungs, kidneys, brain and digestive organs. Sjögren's can occur alone but many cases occur along with other autoimmune connective tissue diseases like rheumatoid arthritis, lupus or scleroderma.

For reservations, please contact Shani Corbière at sjogrens@att.net or call 281-221-0068.

Schedule of Conference Speakers:

9 a.m. - Introduction
Shani Corbière - Sjögren's Syndrome Houston support group director

9:10 a.m. - BCM Biology of Inflammation Center Dr. David Corry - chief of immunology, allergy and rheumatology at BCM

9:20 a.m. - BCM Sjögren's Syndrome Clinic Margaret Olfson - senior ophthalmic technician in ophthalmology at BCM

9:30 a.m. - Rheumatological Manifestations of Sjögren's Syndrome Dr. Tara Rizvi - assistant professor of medicine - rheumatology at BCM

9:50 a.m. - Dental/Oral Manifestations of Sjögren's Syndrome Dr. Charles F. Streckfus, professor, Diagnostic & Biomedical Sciences at University of Texas School of Dentistry at Houston

10:10 a.m. - Question and Answer session

10:25 a.m. - Break

10:40 a.m. - Head and Neck Manifestations of Sjögren's Syndrome Dr. Nadia Mohyuddin - assistant professor of otolaryngology - head and neck surgery at BCM

11 a.m. - Eye Manifestations of Sjögren's Syndrome - Dr. Stephen Pflugfelder - professor of ophthalmology at BCM and director of the Sjögren's Syndrome Clinic

11:20 a.m. - New Research findings at BCM Dr. Cintia de Paiva - assistant professor of ophthalmology at BCM

11:35-1 p.m. - Question and Answer and Discussion

Sjoggie Leaf Peeper

One of my favorite activities at this time of year is to drive to the country and go leaf peeping.  It might sound like a strange and maybe even dirty phrase, but in the northeast it just means viewing the bright and beautiful colors of the fall foilage.  That is just what my husband and I did this past weekend.  It was particularly special because we had had to take a break from this tradition in previous years when my autoimmune illness was undiagnosed and not yet treated.  The bumps and vibrations of being in the car had caused me intense neurological pain so there was reason for celebration on this sunny fall day.

Even though it is already mid-October, the leaves were just starting to turn in our neck of the woods.  It was still gorgeous scenery and being in nature and away from the hustle and bustle of daily city life is certainly soothing.  We stopped at apple orchards along the way and the apples were juicy, crisp, and right off the farm.  While I have to admit that I was beyond completely tired by the time we got home and had to retreat to the sofa for a number of hours, this was one of those times it was definitely worth it.

Here are some pictures from our little road trip:

Sjogren's Eye Drop Klutz

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If I haven’t stated it before, I have always been a klutz and accident prone.  I sometimes trip just walking down the street.  If you leave a computer plugged in next to me, there is a good chance I will trip on the cord.

What most recently landed me at the eye doctor is slightly embarrassing.  (It is also not the first time that some variation of this has happened.)  I was doing a little reading in bed and started dozing off.  I hadn't put my eye gel in and decided in my half asleep fog that I might be able to do it without a mirror.  Well, I was able to get the gel in my eye while at the same time poking my eye right under the eye ball.  It did hurt and my eye felt achy.  I wanted to ignore that it didn't quite feel back to normal the next day, but on better judgment and my husband’s reasoning with me, I decided there was nothing to lose in having it checked out.  I have 3 or 4 ongoing issues with my eyes so taking good care of them is a big priority.

Well, the good news is that the eye doctor saw no abrasion of my cornea or the white of the eye.  I have poked my eye two other times when putting in eye drops or gels over the last two years.  Only one of the times did I need immediate medical care and actually scratched my cornea.  Usually I make this stupid mistake, when I am tired and not paying enough attention to what I am doing.  

In my defense because I have Sjogren’s, my eyes are extremely dry and require continuous drops to provide some moisture.   I also contend with other eye conditions such as corneal inflammation, uveitis, and blepharitis that require medication.  This means that I am putting drops in my eyes on average 12 times a day or 4380 times a year.   So by this calculation it is not unreasonable to mistakenly poke oneself in the eye three times in two years with an eye drop, right?  Still, feels pretty dumb to end up at a doctor for that reason.

I think that I will have to put a hand mirror on my nightstand for anymore attempts to put in drops from bed.  I can’t be the only person with Sjogren’s or dry eyes that’ve had this kind of accident.  What are your tips for avoiding those eye drop pokes?

Nursing Care As It Should Be

While I often devote many of my posts to problems with the medical care I encounter, I do think it is just as important to share my good experiences with medical professionals.  I have been fortunate over the last number of months to have had stellar nursing care when I have been at the hospital for infusion treatments.  These nurses make the ordeal of my monthly treatments at least bearable; and without their care and support I’m not sure that I could tolerate what I repeatedly go through.

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First and foremost, these nurses are obviously good at the medical part of their job.  In my case, they are constantly adjusting my infusions and dealing with the challenge of a having a highly allergic patient.  This usually means extra attention and care, which means extra time.  In addition, the nurses’ jobs are clearly stressful on a daily basis.  Every time I receive treatment, I see some sort of emergency situation arise during the day with one patient or another.  Yet, they are always handling these situations, seemingly with ease.  They take care of the problem and don’t ever seem to lose track of what’s going on with the other patients.   I know this is no accident and that they are highly trained to do just this, but it is still something I find remarkable.

But what led me to write this is post is not just the obvious things they do, but the assortment of little thinks they do that make having to spend time at the hospital a little less of a drag for me.  In short, these nurses provide humanizing care that helps me and I am sure other patients get through difficult health problems.

So many examples come to mind.  I am thinking of one nurse in particular who hugs me upon my arrival.  We share stories about our families and recent events in our lives.  When she finally met my husband, she was excited to put a name to his face and now asks about him every time I’m there.  I am not made to feel like just another patient or a nuisance, which has been the case in many other hospital situations I have had.  It seems to bother her more than me when she puts in my IV. She goes as far to apologize when she puts the needle in and especially if she has to do it a second time.  I know she really does care and such compassionate treatment is rare and truly makes a difference in how a patient feels.

I often observe how she and her co-workers talk to other patients as well. It is really they who explain the side effects of medications and treatment in an understandable way from what I can see.  On many occasions, I have heard other patients thanking these nurses for telling them something that they had no idea about or didn’t quite understand after their visit with their physician.  It is this rapport and relationship building that makes patients comfortable enough to ask a question and share information about a medical problem they are having, and as a result, better medical care occurs.

At the same time, I believe the welcoming atmosphere that the nurses create fosters an overall sense of camaraderie among patients at the infusion center.  I have my regular cross word puzzle buddy who is a grandmother, 40 years my senior.  There is my friend who accompanies his mother for infusions who started to bring me free movie tickets when he learned that I was a fan.  Patients share cookies they have baked.  You get the picture.

I do wonder if others have had similar experiences.  I am also curious if anyone has tried to track the effectiveness of various infusions centers, with patients receiving the same treatments.  I have to believe that the quality of the nursing care in the way they administer treatments, solve problems, and answer questions can really make a difference.  I am certainly grateful for the nurses who treat me and try to let them know it every chance I get.

"You Only Have Sjogren's"

"Only."  If it were "only" anything. What a dreaded word for many of us afflicted with this condition.  It's something I, and most others I know, have heard variations of before...from friends or colleagues.  But I don't expect to hear it from a doctor.

I was seeing a dermatologist for complications my doctors believe were related to my autoimmune disease. The resident came in first and asked about my rheumatological history.  When I said I had Sjogren's--which is only one part of my complicated history--his comment was, you guessed it, "You Only Have Sjogren's".   I could have strangled him with his stethoscope right there. Really? Only?  Like he had any idea what that meant.

At that moment, I decided that I needed to speak up instead of reaching for his neck.  If I had said yes, I would have been an accomplice in aiding and abetting ignorance. Playing into his ignorance that Sjogren's was not a serious, potentially multi-system, and disabling disease.  So, I opened my big mouth trying to strike a balance between being polite and firm and decided to start educating.  I informed him that "saying I only had Sjogren's is just not accurate" and I went on to outline some of the specifics of my illness and how it has affected my life. I included the fatigue, joint pain, eye pain, pulmonary problems, and, in my case, cranial neuropathies as well.  He seemed to think Sjogren's was just the dryness disease.  I almost laughed as I told him "I wish."  I am hoping that hearing my story of the years until diagnosis (some painful irony that this doctor was with the same hospital which had never figured out my diagnosis) and the range of symptoms I possessed would change how this doctor viewed the disease and would treat his future patients.

I have heard other doctors and lay people make this type of statement before. Though I always found it troubling in the past I would have often said nothing.  But I've decided educating everyone I can is a small thing I can do for others with Sjogren's.  If patients with Sjogren's like me are not going to educate others, the widespread lack of awareness will certainly stay the same.  People will continue just to associate Sjogren's with dry eyes and dry mouth--aliments that many consider a nuisance and can easily be managed (although we know even those symptoms are not so simple).  They will not understand how you can be disabled when you have Sjogren's and assume you can function just like anyone else.

I'll give the resident some credit. I think after recovering from being stunned after my lecture, he seemed to understand this was something he probably should think more about in the future.

This whole exchange got me thinking and doing some additional research. I wondered what the standard literature said. A little bit of google research took me to the American College of Rheumatology Sjogren's Patient Education Page.  Lo and behold, Sjogren's is made to sound like a very manageable disease where symptom relief mostly focuses around dry eyes and dry mouth.  A few eye drops and you should be all set. Complications beyond dry eye and dry mouth are made to seem like rare anomalies and it would appear those with Sjogren's have to make very few life changes.

To quote them:

BROADER HEALTH IMPACT OF SJÖGREN'S SYNDROME
A vast majority of patients with Sjögren's syndrome remain very healthy, without any serious complications. Patients should know that they face an increased risk for infections in and around the eyes and an increased risk for dental problems due to the long-term decrease in tears and saliva.

Rarely, patients may have complications related to inflammation in other body systems, including:

• Joint and muscle pain with fatigue
• Lung problems that may mimic pneumonia
• Abnormal liver and kidney function tests
• Skin rashes related to inflammation of small blood vessels
• Neurologic problems causing weakness and numbness

In a small number of people, Sjögren's syndrome may be associated with lymphoma, a cancer of the lymph glands.

Well, lucky me I've got four of them.  Most others I know who suffer from the condition have multiple symptoms and the list above is not even extensive (Check out this diagram from the Sjogren's Syndrome Foundation for a more comprehensive list of symptoms).  The broader medical community still seems very much behind the times with autoimmune diseases.  I'd say the burden for educating them and the broader public has to begin with us. If not us, who?