Ankylosing Spondylitis

Ankylosing Spondylitis - pronounced ank-kih-low-sing spon-dill-eye-tiss. Pronouncing it is already hard enough. Imagine a whole lifetime with Ankylosing Spondylitis (AS). There is only meds to slow down the effect and hopefully diagnosis in the early stages. And too often diagnosis is a little too late.

I chatted an AS patient and his parents. Life wasn't easy with AS. I can't imagine myself living a lifetime with it especially when I can barely sit still. So I decided that I would join #MoveWithAS, a fun run of 3km with obstacles and challenges thrown in to simulate the experiences that an AS patient goes through.
The running was fun and I would say pretty easy. But when the first challenge came along, followed by another and another, as it progressed, I realised that an AS patient moves with great difficulty.
A sense of imbalance with additional weight in my hand.
Combat crawl or belly movement...every step is with difficulty. One struggles to move every limb as an AS patient.
Crawling on my belly and I tried to stand up to run after that...I felt disoriented.
Feel the world spin under your feet. Each step is hard when one is hunched.
Unbalanced extra weight on one's back. This short distance of walk took more effort than a normal walk. Even making a turn was more difficult. Imagine a lifetime of this sensation?

AS is an autoimmune inflammatory of the spine and over time causes the vertebrae in in the spine to fuse. When the fusing happens, this results in a hunched-forward posture. With it, comes a lifelong feeling of moving with an extra load on your back, a spinning feeling in the head and instability on the feet. Simple acts of eating or feeding one self may be difficult as well.

This is a form of arthritis disease and unlike the other arthritis disease, AS usually begins in adolescents and young adults, with men having higher chances of developing AS. Patients with this degenerative disease often live life unaware. Often times, when patients are diagnosed with AS, they would have developed advanced stages of AS, making it harder to slow down the progression of the disease.
The progressive hunching of an AS patient.
Using the chopstick is easy. It is a different level or ball game when you are moving with stiffness in your joint. Here, all participants had a feel of trying to pick up beans, ball etc with additional weight on their wrist and neck. Totally uncoordinated and it took almost forever just to pick something up without it dropping back to the plate again.

The cause of AS is still currently unknown but is likely caused by both gene and environmental factors. And some symptoms include:
Back pain and stiffness are usually the main symptoms of AS. One may find that the the pain gets better with exercise, but doesn't improve or gets worse with rest. For some, the pain and stiffness is worse in the morning and at night – you may wake up regularly during the night because of the pain.
Lower back pain for no apparent reason is not typical in young people. Teens and young adults who complain of stiffness or pain in the lower back or hips should be evaluated for AS by a doctor. Pain is often located in the sacroiliac joints, where the pelvis and spine meet.

• You have a family history of AS. People with certain genetic markers are susceptible to AS. But not all people who have the genes develop the disease, for reasons that remain unclear. If you have a relative with either AS, psoriatic arthritis, or arthritis related to inflammatory bowel disease, you may have inherited genes that put you at greater risk for AS.
Young people with unexplained pain in the heel(s), joints, or chest.
A hunchback AS young adult patient

For all who signed up for the fun run by the folks at Arthritis Foundation Malaysia (AFM) and Novartis Corporation (M) Sdn Bhd to drive awareness for AS and to raise funds to help needy patients get access to treatment. 100% of the registration fees i.e. RM55,000 has been channeled to Arthritis Foundation Malaysia (AFM) to subsidize the treatment for needy AS patients.
RM55,000 goes to Arthritis Foundation Malaysia (AFM)
A morning of fun among friends for a good cause. Kudos to all participants!
Old and young came along. Do lend your support when they call for this again next year!
Local community came out to support including free dental check up, games to win freebies etc.
And of course there was the Milo truck too!
I made a new friend. He joined his parents who came to support the event and he even ran close to the 3km on his own too!

For more information on Ankylosing Spondylitis:

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