 Lately, my life has been at a standstill.
For the past 15 years, I’ve found purpose in being a scleroderma advocate, using my voice to share my journey and help others. But I feel like advocacy has started to lose its shine. Six years after my diagnosis, I decided to be open about my journey with scleroderma. Until that point, I’d remained silent about my struggles, as a part of me was afraid of people’s reactions. Would they be able to connect to my story? Another part of me was angry at the hand God had dealt me.  I have always thought of myself as someone who thrives on being independent. But living with scleroderma does not afford me that luxury.
Scleroderma is a major component of my life. Plainly speaking, it’s not something I can stash away or bring out when I want to, like a party trick. I wake up and go to bed living and breathing in a body that is slowly dying.  Fewer than one in five scleroderma patients seek help from mental health services, an international study found.
The patients most often turned to general practitioners as their providers of mental health care, followed by psychologists and psychiatrists.  When I was diagnosed with scleroderma 21 years ago, it was painful to learn that I was no longer an average 19-year-old who wanted to be a nurse. I was now a patient with a disease that most people hadn’t heard of.
 “I used to …” I found myself saying that more and more as the years went on, despite my best efforts to maintain normalcy more than 20 years after being diagnosed with scleroderma.
After that diagnosis in 2001, I began to see myself changing: The things I had once enjoyed were now hard to accomplish. As a child, I loved to dance. This continued into my adolescent years, when I took lessons in tap, jazz, and ballet. Dancing was my first hobby as a child, and I grew to enjoy it immensely. I could close my eyes, let go, and my body would speak for me. I discovered a feeling of freedom that I couldn’t find anywhere else in my life.  Join us on Saturday 25 June 2022 for our Annual Scleroderma Seminar.
Our annual seminar is a wonderful opportunity to come together to hear from guest speakers, learn from each other and enjoy support and friendship. Date Saturday 25 June 2022 Time 8.30am - 3.30pm Venue Kallangur Community Hall 1480 Anzac Avenue Kallangur QLD 4503 Cost $25 Financial Members, $30 Non-Financial Members  Our instinct is often to go along with what our doctors tell us, as they're the authority figures. However, it's important to be able to advocate for yourself if you feel like a treatment isn't for you, or if your doctor isn't seeing the whole picture.
This is particularly common in conditions like scleroderma, which are so complicated they can involve multiple specialists treating you.  Will you Snuggle Up for Scleroderma Australia and help raise funds for a specialist scleroderma nurse?
 This is an IDEAL opportunity to have YOUR say and be heard by our politicians.
The Australian health and medical research sector is at a crisis point due to over a decade of inadequate investment in the National Health and Medical Research Council (NHMRC). Please join our campaign to put health and medical research funding firmly on the political agenda by completing your details below to auto-generate an email to your Federal Electoral candidates. It will take you less than one minute but will put our political leaders on notice that more investment in health and medical research is urgently needed to secure a healthy future for all Australians.  An interesting perspective of being a middle child and feeling "different" until she was formally diagnosed with systemic scleroderma in 2001 at the age of 19. Read how her journey turned her siblings from feeling like "enemies" to now being her best supporters.
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Scleroderma Association of Queensland
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