Dysautonomia and POTS Awareness Campaign In Malaysia
Help prevent diagnostic delay for 1 in 100 Malaysians who may have POTS but doctors don’t know about it to enable a diagnosis and therefore receive treatment!
Dysautonomia (pronounced dis-otto-no-me-uh) is an umbrella term that includes many different diseases of the autonomic nervous system. Over 70 million people worldwide live with a form of dysautonomia. The autonomic nervous system controls all of the involuntary functions of the body, like heart rate, blood pressure, digestion, and temperature control. Some forms of dysautonomia are mild, while others are fatal, but all forms of dysautonomia can be very debilitating. People with dysautonomia often suffer for years undiagnosed, due to a lack of awareness.
The awareness campaign in Malaysia has been led by Balqis Osman, a 31-year old working in financial services in Kuala Lumpur, Malaysia, who has a common form of dysautonomia known as Postural Orthostatic Tachycardia Syndrome, or POTS. It is believed that 1 in 100 of the general population develops POTS, which makes it more common than Multiple Sclerosis and Parkinson’s Disease. However, awareness even amongst medical professionals is very low. It took six years and over seven doctors across two countries for Balqis to finally arrive at her diagnosis. As at last count, she is only one of three patients in Malaysia who has even been diagosed with POTS.
Unfortunately there is currently no cure and no drugs approved by health authorities worldwide to treat POTS. Any treatment prescribed is off-label and efficacy can vary between patients. At its worse, POTS can be so disabling that 25% of POTS patients can’t work or go to school.
“In 2016, my symptoms flared up so badly that I was forced to take a sabbatical from work. I was lucky that my workplace was supportive as I struggled to even stay seated without feeling dizzy, nauseous or end up fainting. And all my medication that I was taking for a couple of years completely stopped being effective. What helped me get my life back was a change in my diet and following exercise protocol developed by The Children’s Hospital of Philadelphia, USA. It was hard, but after about two to three months I could actually function like a normal human being. If it wasn’t for my own research and the internet, and organisations such as Dysautonomia International, I believe I would still be very sickly today.” - Balqis Osman
Balqis hopes to raise funds to print information packs to distribute to doctors around Malaysia so that they would be better equipped with knowledge about POTS and dysautonomia. Physician awareness is key to improve the likelihood of patients receiving the diagnosis they need without a multiple year delay, and therefore the medical support they need to improve their quality of life. With your help, we can change the lives of dysautonomia patients nationwide!