Bakr's story: living with ALS in the UAE
Over the past few weeks our founder and CEO, Sjaak, embarked on a unique journey across the world to meet with patients, families, caregivers, patient organisations, doctors, healthcare professionals, healthcare innovators and medical teams. His first stop was in the United Arab Emirates where he met a local business man with amyotrophic lateral sclerosis (ALS), otherwise called motor neuron disease (MND).
Meet Bakr. He's a husband and father living close to Dubai with his wife and children. He's also a tech-savvy sales manager who would often fly to countries such as Italy, Denmark, Turkey and China to attend conferences and work events.
In 2015, Bakr began to feel pain in his shoulder and arm. After some visits to the local doctors, they came to the conclusion that something was wrong with his shoulder muscles and suggested that Bakr needed surgery. However, even after the surgery the strength of his shoulder muscles continued to decrease.
While visiting family in Lebanon in 2016, he consulted a physician and was diagnosed with ALS. Bakr and his wife had never heard of ALS before and went back to the doctors in Dubai for more information. They were shocked to find out that the doctors there knew little about this disease and could not give him further information, much less treat him. There was no one to turn to, no patient organisation, health foundation or medical specialist in or around Dubai. He felt helpless.
Help is available
So Bakr returned to the Lebanese doctor to receive information and medical care. He also began searching the internet for more treatment options. This is when he discovered our service. After contacting us and consulting with his doctor, he was able to access treatment intended to slow the progression of the disease.
After four years, Bakr is still walking and talking independently. He continues his work as a sales manager with the support of his company. Instead of flying across the globe, Bakr now works remotely in order to have the time and space needed for the daily care and treatments necessary to extend the quality of his health. He takes his medicine for 10 days, followed by 18 days of rest. In the meantime, he undergoes physiotherapy two to three times a week and exercises at home as much as he can. He visits his doctor every six months, and so far he’s only been scoring 4% less each time according to the ALS Functional Rating Scale (ALSFRS), and his doctor couldn’t be happier with these low numbers.
He thanks his wife for being his support over the years and wants to alleviate the physical and mental strain by connecting with others in the ALS community. However, the current situation in the Dubai area remains largely unchanged. He tells Sjaak that very few are diagnosed with ALS because there is still a lack of knowledge about the disease. Additionally, those who are diagnosed feel isolated or are closed off from the idea of sharing such a personal part of their life. Despite these challenges, Bakr is still seeking to communicate with patients locally or abroad, and we are working to connect him to other people whose lives have been influenced by this disease.
If you, your loved one or patient are part of such a community and would like to share your experiences, tips or just want to connect to Bakr as a fellow ALS patient, please feel free to contact us via email or by calling us. We will be more than happy to connect you.