We need a Cure for Autoimmune Disease called - Sjögrens Syndrome

Fundraiser Alison Bovey
Funds go to My Cause Gift Fund
$700 raised
70%
GOAL $1,000
21 donations
 
since Apr 2018
 
 
 
 

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.

6
updates

30
Jun
Thank you to everyone who supported my cause by donating funds that will go towards raising awareness and research for Sjögrens Syndrome.
I didn’t get to raise as much as I would have liked but every dollar counts, and until awareness increases and more people know what Sjögren’s syndrome is it will be an uphill battle to spread knowledge of this autoimmune disease and the devastation it can cause. Please see www.autoimmune.org.au & www.sjogrens.org.au or www.sjogrens.org

Thank you once again
Alison Bovey (Sjögrens Syndrome Sufferer)
06
Jun
JUNE 30 is fast approaching
EOFY means tax time is coming
SAVE on your payable tax by Donating
MAKE A DONATION TODAY
Please Share this campaign and help me reach
my goal, it’s all about spreading awareness of
SJÖGRENS SYNDROME to the world
We need to help our researchers to find a Cure.
We need to make people aware that this disease
is so much more than dry eyes and dry mouth.
Sjögrens is a systemic disease in which the immune system wrongly attacks the body’s healthy cells
causing joint problems and pain, fatigue, organ
issues like pneumonia, lung damage, kidney damage, heart problems, nerve damage, plus so much more and Lymphoma. Little is known how the disease starts. It affects more women than men at a ratio of 9:1. There are no specific treatments for Sjögrens, it’s trial and error. Current study shows the treatment of Plaquenil works no better than a placebo, so my Rheumatologist is giving me nothing to stop this disease until my disease progresses into organ involvement. As treatments that suppress the immune system are basically low dose chemotherapy taken for a longer time, these have very dangerous side effects.
Please encourage others to give to this very needy cause.

Regards
Alison
06
Jun
JUNE 30 is fast approaching
EOFY means tax time is coming
SAVE on your payable tax by Donating
MAKE A DONATION TODAY
Please Share this campaign and help me reach
my goal, it’s all about spreading awareness of
SJÖGRENS SYNDROME to the world
We need to help our researchers to find a Cure.
We need to make people aware that this disease
is so much more than dry eyes and dry mouth.
Sjögrens is a systemic disease in which the immune system wrongly attacks the body’s healthy cells
causing joint problems and pain, fatigue, organ
issues like pneumonia, lung damage, kidney damage, heart problems, nerve damage, plus so much more and Lymphoma. Little is known how the disease starts. It affects more women than men at a ratio of 9:1. There are no specific treatments for Sjögrens, it’s trial and error. Current study shows the treatment of Plaquenil works no better than a placebo, so my Rheumatologist is giving me nothing to stop this disease until my disease progresses into organ involvement. As treatments that suppress the immune system are basically low dose chemotherapy taken for a longer time, these have very dangerous side effects.
Please encourage others to give to this very needy cause.
10
May
?Why not donate in honour of your mum for Mother’s Day.
?We need a Cure for Autoimmune Disease called - Sjögrens Syndrome
Donate here: www.mycause.com.au/page/174088?
If you would please share this fundraising campaign on your Facebook page, Twitter, Instagram or Email that would be great.
?#donate #fundraiser #sjogrens #mum #mothersday #mom ?
Thank you
Alison & Craig Bovey
25
Apr
Hello to all of our lovely contributors, we have made it to $575,we have a long way to go. I have been continuing to share the campaign but things have slowed down. There is only a few more days left in April for Sjögrens Syndrome Awareness Month so I ask if you would share this fundraising campaign with all of your work colleagues, your friends and family.
If anyone would like you can join up as a member to ARRC just visit www.autoimmune.org.au; they also have great information available, a shop with useful products for people with autoimmune disease symptoms. Sjögrens Australia TASSA also have memberships and great information available about Sjögrens and a few products available in their shop see these at www.sjogrens.org.au
Sjögrens Info: 9 out of 10 people diagnosed with Sjögrens are female. The average age of diagnosis is 40. There maybe many women suffering with Sjögrens now but haven’t been diagnosed yet. People can go years with a misdiagnosis, a stress event is often the reason Sjögrens symptoms flare up considerably and leads to getting a diagnosis. Even from the first blood test that suggests an autoimmune disease you are looking at months of other tests to confirm what autoimmune condition/s you are suffering from.
The main symptoms initially are dry eyes, dry mouth, joint pain, muscle pain, low energy, if you have these symptoms on a continuing basis you should talk to your GP about testing.
I thank you again for your support and donations and for sharing the campaign it means a lot to us.

Thank you
Alison & Craig Bovey
11
Apr
My online fundraising campaign has made a good start, so far raising $180 towards finding a cure for Sjögrens Syndrome, but I have a long way to reaching my goal. I thank everyone who has donated money so far to my cause, no matter what the amount it very much appreciated.
If anyone is able to share this on their Facebook, Instagram, Twitter or other social media page or to any groups this would be very helpful to my cause.
Let’s keep the momentum going.

Kind Regards Alison ????????
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$700 raised
70%
GOAL $1,000
21 donations
 
since Apr 2018
 
Fundraising for
My Cause Gift Fund for Autoimmune Resource and Research Centre and The Australian Sjogrens Syndrome Association
Funds donated to the My cause Gift Fund will be split 50/50 between The Australian Sjogrens Syndrome Association and Autoimmune Resource and Research Centre. The Trustees will always disburse funds to the nominated cause, however in the case that is not possible, the funds will be disbursed to a DGR charity at the trustees discretion.
About fundraiser
Alison Bovey
Kelso QLD
 
 

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