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From Pain to Passion: The Disabled Muslim Network Gets Busy

Zenab Shah shares her journey of living with multiple disabilities and her vision for the future of disabled Muslims.

My name is Zenab Shah, founder of the Disabled Muslims Network (DMN). I was born very prematurely, approximately three months early, and because of this I suffered from swollen ventricles. My parents were told that I wouldn’t survive, but they still named me Zenab, after the granddaughter of the Prophet Mohammad (SAW). I was kept in the intensive care unit for three months, until I reached my actual due date, and then after miraculously showing signs of improvement, I was moved to another ward where I was kept for a further two months until I was strong and healthy enough to go home for the first time.

 

 

Throughout my childhood, I experienced a lot of health issues. At six months, my vision became a problem, as my eyes hadn’t developed enough at birth, so I had to start wearing glasses at nine months old. Then my hearing began to deteriorate and the operations I had to fix it caused holes to develop in my ears. As I got older, my mother noticed that I was a lot smaller in size compared to other kids my age. For two years, she took me to the doctors repeatedly, only to be told there was nothing wrong. Eventually, at the age of six I was diagnosed with Growth Hormone Deficiency, which meant that I had to have daily injections to help me grow at a normal rate and develop properly. At the age of nine, I began to experience pain and a numbing sensation in my legs. I went to the doctor and I was diagnosed with Charcot-Marie-Tooth disease, a condition where the nerves were damaged in my legs.

 

 

They also put us in touch with charities and organisations that helped children with health issues, who would take my family and I on days out, and these small but kind gestures really helped when facing the difficulties of daily life.

 

 

Throughout this childhood ordeal, I managed to deal with everything with the love and care of my mother. Without her, I never would have been able to cope with any of it. The doctors and nurses were also very supportive and tried to help out where they could. They also put us in touch with charities and organisations that helped children with health issues, who would take my family and I on days out, and these small but kind gestures really helped when facing the difficulties of daily life. When I reached my teenage years, my growth hormone injections were stopped. It was a great moment for me; I thought that the bulk of my medical problems were behind me and I was ready to embrace and enjoy a healthy life. Sadly, the honeymoon period lasted for only six months. I started to experience pain in my back, which steadily became worse over time. After three months, I had to start using a wheelchair. I went to see many specialists in the hospital during this time, but none could figure out what was wrong.

 

 

In April 2004, I was sent to a rheumatologist, and what I was told that day changed my life. I had been diagnosed with Ankylosing Spondylitis, which is a type of arthritis that affects the spine and joints. The main symptoms are severe back & joint pain, inflammation of the spine and joints and severe fatigue. Unfortunately, there is no cure for this and the treatment is only to ease the pain. When I was given the diagnosis, I knew my life would never be the same again. Learning that I had arthritis came as quite a shock, because I assumed that it was something that only older people could get. Following the diagnosis, the doctors began to trial some different medications to find the one that reduced the pain and helped me with my mobility. Some medications helped, but I knew that not all the pain would go away. It was all a lot to cope with physically and emotionally at the time. I tried to resume living a normal life. Six months after my diagnosis, I started my first year of college. I found it very difficult to cope with the workload and going to college five days a week. It was absolutely exhausting and the pain became so intense that I had to drop out. It was a new low for me.

 

 

A year later, I felt a bit stronger, so I enrolled in another college. With great difficulty, I managed to finish a full year. It was very hard, but I was pleased with myself. I started another course the next year, but by then, my health had deteriorated to such an extent that I had no choice but to drop out completely. In 2008, the doctor checked my growth hormone levels to see if this may have been making my arthritis worse. They found that I still was not producing any of the hormones, so I had to resume my daily injections. Over the last nine and a half years, I have been through a lot. The pain has been difficult enough, but knowing that the disease will never go away has made it even worse. Every part of my life has been affected. Studying is now not an option for me. After suffering from years of depression, I decided to do something that would help me cope with my illness and others who were in a similar situation. I found there was not much support out there for Muslims with disabilities and their families. So, I decided to launch the Disabled Muslims Network along with a Facebook page that provides support to Muslims who have a disability or chronic illness, Muslim parents with disabled children and the families and carers of disabled Muslims.

 

 

Since I launched the DMN in January 2012, there has been an amazing response from Muslims around the world. My aim for the DMN is to make it into a registered established charity that provides a number of successful services. With the support from my family and Muslims from around the world, insha Allah my aims for the DMN will come true. The Disabled Muslims Network is helping me divert attention away from my medical problems by supporting others through their difficulties. For more information about DMN, please visit www.disabledmuslimsnetwork.com and follow us on facebook.

 

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Disability and Motherhood: A Disabled Mother, So What?

Raya AlJadir concludes her two part series on disability and motherhood, this month looking from the perspective of a disabled mother.

 

 

 

 

Zenab Shah is a 25 year old Muslimah living  in London and is the founder of the Disabled Muslims Network (DMN).