Fundraising treatment for Multiple Sclerosis

Hi,
Thank you for taking the time to read my story.
My name is Alisha and I am fundraising for HSCT. Hematopoietic stem-cell transplantation (HSCT) stem cells treatment to stop the progression of my autoimmune disease Multiple Sclerosis.

Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord.

In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause permanent damage or deterioration of the nerves.

In 2018 I experienced my first MS attack. I had a stressful week from work I went to push my self off the sofa and I was struck by lightning bolt pain radiating down my neck and arms. I was unable to move. I was paralyzed from the waistline upwards. I was unable to move my arms, move my neck. I was diagnosed in the emergency with a herniated C4/C5 disc in my neck. I was told rest, take pain medication and I would be ok. The pain never went away and I experienced more problems like numb arms and legs. I was unable to control my bladder. I spent months bedridden. I was seen by multiple specialists and told the pain was a pseudo effect, I was imagining it.
I struggled with life, with returning to work but after a year I managed to return to my normal life and then there was another attack.

My second attack was in 2020, I had a new job, prominent career and suddenly one morning I woke up and I could not see out of my right eye. Everything was pitch black and the pain was horrible. Again I found myself back in emergency and was told the first day at the emergency it was allergies and to go home. Three visits later to emergency a doctor finally provided me an appointment with an optic-neurologist. A CT scan was ordered for a tumour on my optic nerve and again I was told it will be fine, it will go away. Over the week my vision in my left eye also started to deteriorate. I was diagnosed with Optic Neuritis and an MRI with contrast was ordered. I was told 2018 was my first MS attack and I was severely misdiagnosed. I had a lesion in my c4/c5 spine . I also have multiple lesions in my brain and on my optic nerves that is causing my vision loss.
After months of waiting, undergoing multiple steroid infusions, I received my diagnosis of RRMS Multiple Sclerosis. I was immediately started on Rituxan a chemotherapy drug to help restart my immune system. The treatment failed and again my eyesight and mobility were affected. I experienced 8 optic neuritis attacks in one year and spent months bedridden again.

My neurologist decided a more aggressive drug was needed and to start Tysabri an infusion every month for the rest of your life. Tysabri is a disease modifying drug for Multiple Sclerosis. It has high risk factors for brain disease PML and bloodwork will be done monthly to monitor. The treatment worked but unfortunately my body started to reject the treatment and I found myself with loosing the ability to see out of my right eye and blurred vision in my left.

Currently HSCT is the only drug for multiple sclerosis that stops the progression and repairs the damage to myelin. Lesions are significantly smaller or non existent. It is done currently in private settings such as Mexico, Chicago, UK and Russia and has a 80% success rate in curing Multiple Sclerosis. Canada has yet to approve the treatment but the evidence supports it is successful.

I hope to be eligible to have HSCT. I am 32 years old and my disease is aggressively attacking my body. I am fearful that in the next five years I will be blind or in a wheelchair. I thank you all for your support and generosity.

  • Kathryn Morse 
    • $100 
    • 8 mos
  • Shivani Chidella 
    • $30 
    • 9 mos
  • Anonymous 
    • $5 
    • 10 mos
  • Michael Beddoes 
    • $100 
    • 10 mos
  • Anonymous 
    • $100 
    • 10 mos
See all

Organizer

Alisha Daly 
Organizer
Vancouver, BC