Update

Jaber in time of the Covid-19 pandamic

The Covid-19 pandemic has brought changes and restrictions of different types for all of us around the world. I would like to tell you what it means for me, a student with multiple sclerosis (MS). For a long time, I could not consult my doctor because of the pandemic. However, I appreciate that this restriction was introduced to protect us and to prevent the spread of Covid-19. Thus, during the confinement period, I continued to take the same MS treatment. In my case, this is the drug Azathioprine, sold under the brand name Imurel-50MG. Imurel is an older drug that can be used as an immunosuppressive agent when applied to autoimmune diseases such as rheumatoid arthritis. I experience stomach pain and vomiting as a side effect of this drug. I also take Vitamin B9 for anaemia, as this can be another side effect of immunosuppressive drugs in which there is a decrease of red blood cells or haemoglobin in the blood. Within the last two months, I decided to start physiotherapy to help reduce muscle twitches, spasms, tremors and trembles. So, three times per week, I do a lot of muscle stretching and cycling to strengthen my spinal muscles.

Despite this, I try to survive day by day with the maximum possible energy (although I have very little). I try to walk a little every day and sometimes I have a coffee and hang out with some colleagues. My favourite hobby is playing the guitar, but I have stopped playing because of a tremor in my right arm. Apart from that, I enjoy spending time with my sister and one of her best friends. We even had the chance to visit the ancient centre of Tangier and enjoyed eating lunch by the sea.
 
Recently, we had the opportunity to visit the doctor at the end of September. He advised me to get a scan with magnetic resonance imaging (MRI) to clarify the current status of my brain. An MRI costs €400 which we paid for privately. The same day, I went with my sister to a private laboratory to do the analysis. After two days, we received my MRI analysis and immediately visited the hospital neurologist. Examination of my symptoms and the MRI results showed that I have a relapsing form of MS and some new lesions. The neurologist suggested the drug Ocrelizumab, which is sold under the brand name OCREVUS. Ocrelizumab was just recently approved in the US (2017), and in Europe (2018) and is designed for the treatment of relapsing forms of MS. This drug is administered through an intravenous injection. In my case, the plan is to apply the treatment twice a year. However, as of yet this drug is not included in or refunded by my health insurance plan and very costly. One dose of treatment costs about €12.000 and is therefore too expensive to pay for out of one’s private pocket. This is, of course, very disappointing for me as I want to be active and enjoy playing the guitar again and continue to participate in my studies. Both I have not been able to enjoy lately due to loss of motor control, but also because in a recent MS attack I have lost the ability to speak and communicate with the people around me, making it very hard to participate in life.  
 
The treatment with Ocrelizumab is a big chance for Jaber to be able to enjoy those small things in life again, being able to use speech, play guitar again and enjoy having lunch by the sea. Hence the reason why the HNP started a fundraising campaign to help Jaber getting access to this treatment. Are you in a place where you can miss a little money? Click on the GoFundMe button and help this young man out. Every small amount of money is highly appreciated.

Gofundme