Sunday, June 20, 2010

Quality of Life For a Sjoggie

Warning: Venting in process. AKA Julia spouting off, indulging in excessive whineybutt behaviors, and/or tantrum-ing.

Image found here.

I've been doing various scientific literature searches ever since I began writing Reasonably Well, so I've read countless abstracts and conclusions of zillions of studies related to Sjogren's Syndrome.

My most recent searches have been directed towards documentation studying the impact of quality of life for patients with Sjogren's Syndrome. As in: Am I the only one who feels amazed at the enormous implications of this disease? Am I the only one that is resentful that my career has been snatched away from me? Am I the only one that thinks wistfully back to previous activities and hobbies that are now beyond my capabilities? Am I the only one that is furious that my mental capabilities have been diminished now when I need them the most?

According to numerous studies, no, I am not alone in my symptoms and feelings, and of course I realize that. Here's a small sampling of research-ese that confirms this. From Oxford Journals Rheumatology 2004:

FIG. 1. Mean and 95% confidence intervals for fatigue and general discomfort ratings at worst in the Sjögren's based questionnaire tool (7 = worst imaginable) for healthy controls and three disease groups.

Translation? Yes. Sjoggies have fatigue, low stamina, poor memory and discomfort much greater than the general population and similar to those with rheumatoid arthritis and lupus.

Here's another study entitled "Primary Sjögren's Syndrome: health experiences and predictors of health quality among patients in the United States", published May 2009 and found here, on the NIH PubMed site. Their conclusion:
"Diminished health quality and excess health costs are prevalent among PSS patients. Health experiences and functional impact of PSS is similar among US and European patients. Delayed diagnosis, sicca related morbidity, fatigue, pain and depression are substantial suggesting unmet health needs and the importance of earlier recognition of PSS."
Table 1
Patient profile: Demographics and clinical features
Demographics and Clinical CharacteristicsPhysR-PSSControls

N = 277N = 606
Age (Mean ± S.D.)62 ± 12.661 ± 12.2
Gender (% Female)90%92%
Employment Status
 Employed (net)38%49% (1,2)
 Not Employed (due to disability)12%*0%
Disease Duration (Mean ± S.D.)9.0 ± 8.4N/A
Time from first symptom to diagnosis (Mean ± S.D.)7.1 ± 9.4N/A
Extra-glandular Symptoms
 Raynaud's51%*14%
 Forgetfulness67%62%
 Depression (reported by patient)54%*41%
 Lymph node pain or swelling41%*12%
 Muscle pain60%*42%
 Joint pain78%*52%
 Neuropathy ("pins and needles," tingling and/or numbness in extremities)70%*41%
Extra-glandular Conditions
 Purpura/petechia14%*4%
 Vasculitis17%*2%
 CNS Sjögren's22%*1%
 Leucopenia21%*5%
 Lymphoma12%*2%
 Lung Disease16%*6%
Ocular Sicca-related Disorders
 Chronic blepharitis30%*5%
 Corneal scarring18%*2%
* p < .05.

Want another translation? Hell, yes!!  Sjoggies, represented by the first column and the higher percentages, have significant and life-changing symptoms of this disease. Symptoms that are not recognized early and even when diagnosed and documented, are poorly treated with resulting diminished quality of life.

Each and every study that I have read inevitably ends with a phrase similar to this - Sjogren's Syndrome is a progressive and treatment-resistant disease. More research is needed.

!!!!!!!!!!!!!

So get on it, all you researcher-type people! I KNOW that my quality of life is crummy. I want you to spend less time proving that my quality of life is crummy and MORE time figuring out a way to make things better!  


!!!!!!!!!!!!!

*Julia mops perspiration from brow and attempts to calm her fiery-eyed snorting*

OK. Whew. I'm done. Gee, I feel better. Exhausted from all that screaming and yelling, but better.

As you were, people. Carry on.

2 comments:

Jenny Pettit said...

*Hug*

I think we both need a slush;) Ok, maybe I'm just a lush:D

Anonymous said...

Venting is perfectly reasonable now and then, given what you are faced with. There is a variety of over the counter (Expensive) stuff for dry nose, eyes, mouth and other areas which adds even more to the financial burden that is never covered by any insurance.

After reading your post I feel even sorrier for myself too. I have only secondary sjogren's but it came with RA

Annette

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