Amal AbdulRahman

Country: Saudi Arabia
Age: 32
Profession:
Freelance teacher and translator
Type of MS: Relapse Remitting
Year of diagnosis: 2001

Multiple sclerosis (MS) was a disease I had seen mentioned in articles several times. It was one of those topics I had intended to read about ‘later’. In 2001, it was ‘later’ and I had to read as much as I could about it.


I woke up one morning with a dull ache in my left arm. I ignored it and went to work. The doctor I visited a week later said it was nothing and would go away soon. It gradually did. A month later, after a short afternoon nap, I could not move my arm at all. I tried standing and my leg was weak and I was leaning to one side. I thought I had slept in a wrong position and things would be normal within a short time like before. That didn’t happen.

I visited a couple of doctors who gave me unconvincing explanations with very confused looks on their faces until I visited the third doctor who, after several questions, called in a neurologist. After a second check-up with the neurologist, he suggested I have an MRI done as soon as possible. The doctors were discussing my case unaware that I understood English, and I heard them say “possible MS”.

At home, I got online and read as much as I could on MS. It all made sense, the fatigue, the aches, the muscle spasms, the numbness. I knew this is what I had and it was a relief to know. A week later the doctor confirmed it. I started treatment that weekend.

Everyone at work thought it was just fatigue and stress and I needed to rest. I had taken about four weeks off and had sent administration my doctor’s report for that time off. They had no idea what MS was and requested a full check-up to see if I was still qualified to work. I never did that and quit soon afterward. I found a new part-time teaching job. My new boss, who had a friend who also had MS, was very understanding. Since then, I have moved on to freelancing (teaching and translating).

Many close friends heard I wasn’t doing too well and several called or came to visit. It seemed everyone knew someone who had had a similar episode because of stress. I am quite certain none of them had ever heard of MS. Very few people know of my diagnosis and I prefer to keep it that way. I am very selective about the people I tell.

I joined several MS forums and groups and found a lot of helpful information. Unfortunately, I couldn’t find any site or forum in Arabic dedicated to MS*. In 2004, I started a group on yahoo. A friend suggested I start a site on MS in Arabic and he offered to fund it. My sister and I translated MS information from different sources for the MS-Saudi website. The site was great, but I was hoping for interaction with people who had MS. A doctor friend, who was helping with the technicalities of running the site, suggested a forum where members could meet and he offered to fund that. Several people, to whom I am sincerely grateful, helped with financing, writing, editing, graphics and moral support.

We now have our own logo and motto, a line from an Arabic poem; ‘You are, through your soul not your body, a human being’. People with MS, relatives, friends and doctors have joined from Saudi Arabia and from other Arab countries. Many who join realise that there are other people with MS in their own cities. We, the members and I, hope that through the forum we will be able to form local support groups in each of our cities. We also wish to help spread social awareness of MS since it’s a ‘new’ disease and very few know of it.

Recently, one of my doctors held an open seminar in Jeddah on MS for patients and their families. He had asked me to announce it on the forum. The seminar was a success; we met other people with MS (and a few forum members!), many patients shared their stories, we exchanged numbers, and invitations to the forum were distributed. It was very informative and had a friendly atmosphere to it. This seminar is one of several seminars that will be held in different cities throughout the country.

Saudi Arabia is a hot climate country where MS cases were supposed to be rare. Social awareness of the disease is very limited and remains unknown to most and mysterious to those whose lives it has touched. Our doctors are still going through the process of organising what they can do to help their patients. I also believe that we, the patients, should have an active role in this process as well.

*In October 2006, MSIF launched an Arabic language section of its World of MS website. The section is a translation of core content of the English version of the website and includes information about symptoms, diagnosis and treatments of MS as well as MS society contact details and other useful resources in Arabic.