14. Searching for Emotional Support, Searching for Other Sufferers

For the past few days I have been trying to locate any support group for Muscular Distrophy Disease but to no avail. I searched on the internet but I could not find any support group in Malaysia let alone in KL.

I found few websites but they were dealing with sport injuries and physical theraphy. I also found Hospis Malaysia an association with palliative care that provides relief to patients suffering from life-limiting illness. I called them up but they are not the kind of association I was looking for.

 I found an association for Parkinson's Disease but not MD but I was determined to look for  a group for emotional support in dealing with this rare disease.  If we could socialises with each other and make ourselves feel comfortable wouldnt it be a relief knowing that  we are not alone in dealing with this fatal disease. We could also motivate each other  at the same time.

At  the same I remembered a few months back I have read a newspaper article about how a Malaysian prolific moviemaker Mior Hashim Manaf and his wife a former actress Izzaidah Khairan dealing with their three children who are affected with muscle disease. The three out of seven siblings are affected since they were born.

I contacted Mior and told him about me and my disease and hoping that he would share his experience dealing and raising his children with muscle diseases. he replied my email and told me about his experience and even reccommended me to seek alternative medicine thru a traditional massage on the nerves and relieve the pain. I thanked him for that and I hope to get in touch with his children and I want to know how they deal with their lives on daily basis and how the disease affected their lives.

Meanwhile, after few days of making a few phone calls, I finally managed to find Malaysian Rare Disorders Society (MRDS). It was founded by Datuk Hatijah Ayob in 2004.
Although MRDS does not exclusively  deal with Muscular Distrophy but it was enough for me that MRDS cater Muscular Distrophy with other rare diseases. A rare disorder is a medical condition that affects only a few people in the population and usually has genetic origins. I spoke with Datuk Hatijah about my conditions. She told me only one person has registered with MRDS with Muscle Disease and that person is based in Ipoh.  am sure there are many MND suffrers out there like me but the just do not where to get support. My conversation with er lasted for 15 minutes and she asked me to come and visit MRDS.

I realised there is no cure for my disease. The best I could do is to gather as many people as possible with this disease and their family members. Through support group  hope we could  maintain the highest possible quality of life as long as life remains.