17. A Visit

I set up the Facebook Page Fazz Fadhilah vs Muscular Dystrophy to create public awareness on Muscular Dystrophy as it is a rare disease and hardly heard in my country.

Not many people knowa about it and I want to change people's perception on this disease. I also created the page with the hope that many other MD sufferers like me would come forward and face the reality and lives as normal as possible bravely facing the society.

I know it is not easy to come to term with your affected self but with the right kind of support, I hope they be accepted by the society without any discrimination.

Little did I expect that my page would caught the attention of two famous personalities in Malaysia. First it was Francissca Peter, the singer with an angel voice. I grew up with her songs from Siapa Dia Sebelum Daku, Terlambat Buakan Erti Tamat (OST for Isaura), Sekadar Di Pinggiran, Digenggam Sepi, Kehebatan Cinta just to name a few. She wrote inspiring words on my page and motivate me to be strong.

Next, it was our very own actress, film director producer and a living legend, Fauziah Datuk Ahmad Daud aka Ogy. She commented on my page about me and what im going through and my cause. I never expect to have a direct communication with her. She even called me and asked how I was. We spoke about 30 minutes that afternoon.

She is one of my favorite artiste. I watched most of her films and listen to her songs.

I follow her career since I was a kid. Watched most of her films from Ceritaku Cerita Mu, Azura, Ali Setan, Suara Kekasih, Puteri, Bintang Malam, Bayi Tabung Uji, Pengantin Popularand the latest Anu dalam Botol.

Among her songs that I still remember, Gerhana, Horizon, Simfoni Kasih, Hanya Padamu Saja, Suara Kekasih, Bila Bunga Berguguran, Riwayat Petani, Wajah Rahsia Hati, Sandarkan Pada Kenangan, Both Fauziah and Fran have a duet song each with another of my Favorite singer Jamal Abdillah.

Thank you Fran and Fauziah from Fazz for supporting my page and sharing your concerns and humanities.

16. A friend in need, Is a friend indeed

Last weekend I went for a karaoke session with four friends and we parked the car at the basement of shopping mall. My friend Farid parked his car as close as possible to the entrance so that I don't have to walk far to get to the lift. 

As we walked to the entrance, to my horror there were no lift to the ground floor. My friends were looking for other entrance if there was any lift nearby but to our disappoinment there was no lift at all except for stairs. 

I did not want to spoilt anyone's mood that night so I told them to go ahead  and I would just wait for them at the basement. My friends told me to take my time to step on the stair. So, I started to walk and lifted my legs, but it was not a simple task to step on the stair. My left hand holding on the bar of the stair and my right hand trying to lift both my right and left legs, one at a time. It was a slow process.

Suddenly, Zam was standing infront of me and bending his back and said, " Hop on," I asked "What?".  He said. "Hop on my back and I'll carry you up", He carried me on his back and took me on all of these two storey of steps. I must say I that I am not that light. I am 68kg of weight. We finally managed to get to the ground floor where the lift to the karaoke was.

I was touched by their generosity, the helping spirit as well as the friendship that these guys offer me. They never look down on me and give any negative remarks about my condition. They accept me the way I am and accept my friendship with an open arms.

15. Misconception

There are misconceptions about Muscle Dystrophy. Many people have limited knowledge about Muscular Dystrophy. Some would relate it to Multiple Sclerosis. This confusion is due to the lack of awareness among the society on this fatal disease.
Muscular dystrophy is a group of inherited diseases that are characterized by weakness and wasting away of muscle tissue, with or without the breakdown of nerve tissue. There are nine types of muscular dystrophy, but in each type there is an eventual loss of strength, increasing disability, and possible deformity.

The most well known of the muscular dystrophies is Duchenne muscular dystrophy (DMD), followed by Becker muscular dystrophy (BMD). They cause similar patterns of weakness and disability and are inherited in the same way, although weakness and disability are more severe in DMD. Becker dystrophy is often classified as a less severe form of Duchenne dystrophy. They both are due to defects of the same gene, the normal function of which is to enable muscle fibers to make a particular chemical substance, a protein called dystrophin. Muscle fibers in people affected with DMD are extremely deficient in dystrophin, but in BMD the deficiency is less severe.

Listed below are the nine different types of muscular dystrophy. Each type differs in the muscles affected, the age of onset, and its rate of progress.

Becker - age at onset: two to 16 years; symptoms are almost identical to Duchenne but less severe; progresses more slowly than Duchenne; survival into middle age.

Congenital - age at onset: birth; symptoms include general muscle weakness and possible joint deformities; disease progresses slowly; shortened life span.

Duchenne - age at onset: two to six years; symptoms include general muscle weakness and wasting; affects pelvis, upper arms, and upper legs; eventually involves all voluntary muscles; survival beyond 20s is rare.

Distal - age at onset: 40 to 60 years; symptoms include weakness and wasting of muscles of the hands, forearms, and lower legs; progress is slow; rarely leads to total incapacity.

Emery-Dreifuss - age at onset: childhood to early teens; symptoms include weakness and wasting of shoulder, upper arm, and shin muscles; joint deformities are common; progress is slow; sudden death may occur from cardiac problems.

Facioscapulohumeral - age at onset: teens to early adults; symptoms include facial muscle weakness and weakness with some wasting of shoulders and upper arms; progress is slow, with periods of rapid deterioration; life span may be many decades after onset.

Limb-Girdle - age at onset: late childhood to middle age; symptoms include weakness and wasting, affecting shoulder girdle and pelvic girdle first; progress is slow; death is usually due to cardiopulmonary complications.

Myotonic - age at onset: 20 to 40 years; symptoms include weakness of all muscle groups accompanied by delayed relaxation of muscles after contraction; affects face, feet, hands, and neck first; progress is slow, sometimes spanning 50 to 60 years.

Oculopharyngeal - age at onset: 40 to 70 years; symptoms affect muscles of eyelids and throat causing weakening of throat muscles, which in time causes inability to swallow and emaciation from lack of food; progress is slow.

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.

13. Reconnecting

Re-Connecting (online) with old friends...Yesterday I had a nice conversation with Chrissy Pacaldo whom I have not spoken to for almost nine years, At first I did not remember her but after a few seconds when she said hi, I remembered her as a nice and friendly girl in college with a sultry voice. I remembered working on few assigments with her during our college days in KDU. I lost touch with her when  continued my studies in  Perth. Hema  our mutual friend at college  reccommended  Chrissy  to my FB friend lists. I must say Facebook in awesome in reconnecting with old friends. 

When I asked Chrissy whether she remembered me, she said, "Of course I do",  I almost wanted to cry because I thought most people in college would not remember me.  I was a shy and not so friendly person in college because of the age gap. I was a mature student when I pursued my degree. Chrissy now resides in Manila and engaged to a Filipino guy.  She asked me about my disease and  told her about my disease. Would love to catch up with you Chrissy, when you are in KL. let me know  ya..

The night before I was chatting to Sharifah who was also a mature student in the college. We hardly talk. maybe just exchanged smile and hi and bye, that's about it. But I always remember her as a determined lady from Singapore who had cancer and now she is a cancer survivor. She was married with kids when she studied in KDU. She always hang out with the gang at the college entrance before she went back and I would waved my hand to them and straight away left college after class.  Kak Pah it would nice to hang out with u if u ever in KL.

This morning with Ahmad Kamaruzzaman my former schoolmate for whom I've lost touch for 19 years. He left Victoria Instituion after we finished our SRP in form 3. Since then I never hear from him until today when I met him on FB. He read about my disease that I wrote on my profile. He shared his experience with me regarding his sister's sickness which is similar to MND. His sister had Multiple Screlosis (MS) and  has passed on last year, June 6th.

He told me about how the family took care of his sister and the symptoms. I told him I had similar symptoms. He sasked about my medication and theraphy.  and he he would give me a tradisional medicine that his sister was on,  for me to try.

TQ guys for remembering me, for your support and include me in your prayers. I hope to reconnect with more friends whom I have lost touch.