Raising money for Sjögrens Syndrome (pronounced SHOW - grins) the ‘Invisible’ Autoimmune Disease.
I had never heard of Sjögrens until I was diagnosed last year. It is an autoimmune disease where the body’s immune system wrongly attacks the body;
Sjögren’s (“SHOW-grins”) Syndrome is a systemic autoimmune disease involving gland dysfunction that can affect the entire body.
Because Sjögren’s Syndrome is an autoimmune syndrome, it is found more commonly in families that have members with other autoimmune illnesses. In autoimmune disorders, the immune system, which normally protects the body from infection and cancers, may cause injury to the body’s own tissues.
The most common symptoms of Sjögren’s include excessive dryness of the eyes, mouth, and other mucous membranes; extreme fatigue, and chronic musculoskeletal pain. But Sjögren’s can also affect your organs and cause neuropathies and lymphomas.
It destroys your quality of life and yet no one can see it from the outside. Most days you can look quite normal but inside your body is a battlefield. After the last 2 years suffering from this disease it has taken its toll on my appearance, see photos. And it has also affected my mental health as the chronic pain is difficult to deal with 24/7,with knowing that there is no cure the thought of living with this for years is very hard to deal with.
Sjögrens is more common in women than men as 9 out 10 people diagnosed will be female. Diagnosis is made at an average age of 40years old but it does affect girls anywhere from 8 years upwards which is so devastating to see. This is why finding a cure is so important; to prevent our mothers, daughters, sisters, aunts, grandmothers, wives, friends and also the few males who will be diagnosed with Sjögrens so they will have much better treatment to eliminate this disease
There are two types of Sjögrens:
Primary Sjögrens which occurs on its own and tends to be much more aggressive affecting organs, nervous system etc progressing to development of Lymphoma at a substantially higher rate.
Secondary Sjögrens when Sicca (dry) symptoms occur in association with Rheumatoid Arthritis, SLE or other chronic inflammatory disease. Sjögrens symptoms are usually milder.
There is no cure for Sjögrens.
We need to bring more awareness to this disease and make people aware that it is so much more than dry eyes and dry mouth. Our doctors and medical staff need to have more training of this disease to better treat patients.
We need more money for research as there is no specific treatment for Sjögrens, it’s individual trial and error on what may bring relief to halt or slow down the disease progression. The drugs patients are given are usually low dose chemotherapy that you will have to take for the rest of your life; these drugs bring a whole new set of problems.
Another problem is with our hospital waiting times to see a Rheumatologist is about 6-8 months then every 6 months so getting onto treatment and the right treatment that doesn’t make you sick can take a couple years.
Sjögrens has caused most patients especially with Primary Sjögrens to give up work; it’s a very depressing thing to be in your 40s working full time then suddenly you get really sick and are told we think you’ve got an autoimmune disease, these have no cure and life as you know it is gone. You go through a mourning period, mourning the life you thought you were going to have. The disease hits you hard, affecting your nerves causing neuropathic pain, Fibromyalgia, Tendinitis, brain fog, chronic fatigue, joint pain & stiffness, difficultly showering, difficulty with performing household chores; it leaves you feeling like your a punching bag.
Raynaud’s phenomena is common in Sjögrens Syndrome - it is an interruption to the blood flow to the extremities (fingers & toes) the fingers change colour white, blue, purple, numbness, cramps occur because of abnormal spasm of the blood vessels causes a limited blood supply. Temperature changes, stress and emotional changes. Sometimes it can affect the nose, ears and lips.
I hope that one day everyone (including doctors/medical staff) knows what Sjögrens Syndrome is, how it’s pronounced, what common symptoms are, diagnose it sooner, to reduce the diagnosis time (approx 3 years), I pray that research will find a cure or at least a treatment specifically for Sjögrens to slow it down.
The charities I have chosen: ( No Funding is received from state or Federal Governments)
TASSA - The Australian Sjögrens Syndrome Association - they help provide information to patients with the disease & initiate research in Australia to find treatments and a cure.
ARRC - Autoimmune Resource & Research Centre - they help improve health & quality of life of patients with autoimmune diseases through education, empowerment, advocacy, screening & research. All donations over $2.00 are tax deductible.
I thank you for your generous donation and for contributing to finding a cure for Sjögrens Syndrome.