Living with Sjogren’s – When your grin shows, but your illness hides…

An autoimmune disorder is any illness in which the body turns on itself – white blood cells which are designed to protect your body’s intricate systems malfunction and attack. Types of autoimmune disorder are many and varied, but the majority are able to pass under the radar because they chiefly affect the interior working of glands, joints and the nervous system.

One example which is prevalent in women aged over 40 is Sjogren’s syndrome. As an invisible illness, this one is quite the heavy-hitter. It may be unfamiliar to you, and you might well be wondering how to even say it! Aptly, Sjogren’s is pronounced ‘Show-Grins’ – and as is the case with many invisible illnesses, sufferers are inclined to put on a brave face. Despite chronic pain, fatigue and discomfort, they still show a grin to the outside world.

So what is Sjogren’s syndrome? With this particular disorder, the immune system attacks the body’s moisture producing glands. Sjogren’s is typified by dryness and associated discomforts – swollen tongue, difficulty swallowing, painful sex and sore, burning eyes.

As if this wasn’t bad enough, Sjogren’s also carries with it a wide range of other symptoms, including fatigue, musculoskeletal pain, swollen glands and loss of sensation, and no two sufferers’ symptoms are exactly alike. It evades diagnosis, often masquerading as Multiple Sclerosis, Lupus or Fibromyalgia. One of the most relied-upon tests for Sjogren’s syndrome is a biopsy of tissue from the inside of the lip, but even this can produce a false negative result if the illness is mild or in its early stages.

Because of all of the above, it takes an average of 4.7 years between the onset of symptoms and diagnosis. One famous Sjogren’s patient, Venus Williams, actually waited 7 years to be diagnosed!

Although her time at Wimbledon 2014 was short, Williams’ return to Grandslam tennis has yielded her some incredibly competitive matches, as well as victory in Dubai this February. An incredible achievement for the athlete who recently admitted she has ‘struggled with fatigue for years’. Her success shows that a carefully managed diet and treatment of individual symptoms when they occur can really help to combat Sjogren’s syndrome. However, there is no cure or single treatment available of this systemic illness – yet.

Throughout July, August and September, Covance are conducting a trial researching brand new treatments for Sjogren’s syndrome, showing that Pharmaceutical companies recognise the need to help these patients. They aren’t able to do this without volunteers, and for this particular trial, they especially need women who are surgically sterile and aged under 49. If you would like to find out more, or you think you might be able to help, follow this link to all groups in study 8298553 and be part of something extraordinary.

(Image: Venus Williams 2012 CC BY 2.0 – Wikipedia)

3 comments

  1. Now I understand better the nature of the disease. I completely understand how terrible the disease is. Hoping further research will be done to cure the illness.

  2. As you say Joan, it’s always good to see that something is being researched, especially those illnesses which have bypassed the general public’s awareness. Good luck with the recovery.

  3. Good to see article on Sjorgrens Disease. I’m a suffer myself great to see more research and drug companies being interested they are currently drug trails going on unfortunately as I had endometrial cancer so can’t take part until after 5 years clear.

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