Brian
New Brunswick
Recipient
Blood
Plasma

Share this story:

Rare autoimmune diseases and the lives you save by donating

Hello,

 

My name is Brian Robichaud and I have a very rare autoimmune disease called Myasthenia Gravis (Grave muscle weakness). In the simplest terms, my body attacks the nerve-muscle junction in all skeletal muscles. In addition to arms and legs, the muscles that control our breathing are skeletal (voluntary) muscles, the muscles that control swallowing are skeletal muscles. Simple things like being able to keep eyelids open are affected by these muscles. This disease is estimated to affect around one in 5000(ish) people. I have had this for around 10 years now and, for me, it was caused by cancer on a gland in my chest which is important to the regulating of the immune system.

 

Initial treatment required surgery to remove the tumour at which time I received direct blood transfusion. Followup treatment included radiation therapy to my chest. A common side-effect of radiation treatment near the lungs is radiation induced pneumonia. I developed this and ended up in hospital for recovery. The pneumonia combined with my MG put me into what we call an exhaserbation. This is when our breathing is so weak that we need oxygen support but don't need a machine to breathe for us. I was in hospital for an extended time trying to get better but entirely unable to until I received Plasmapheresis - they washed the bad blood plasma out of me along with the bad antibodies and infused me with healthy plasma provided by you kind people. I literally called it my oil-change. The plasma product went in clear, mine came out about the colour of oil :). After that I was well maintained on just my regular medications for almost 10 years, able to work full time and live a productive life.

 

Halloween 2017 I went into what is referred to as a crisis - the weakness in my chest muscles and diaphragm was so bad that I could not breathe - I had to be intubated and have machines breathe for me. Initial treatment in hospital included Intravenous ImmunoGlobin therapy - this is a blood plasma product that puts healthy immune cells into the blood stream of the recipient. This allowed me to leave the hospital although still very weak. I currently receive IVIG on a monthly basis and that's been regularly improving my quality of life. I hope to soon be off the steroids I have to take to keep my disease in check and rely on less harmful medication and the blood product that is made possible through the kind donations of regular donors. It took me almost a year, but I'm back to work full time now and again contributing to society thanks to the blood product that helps keep me alive.

 

If I were to speak with my donors, I'd first say thank you so very much. Your donations mean I am much more likely to see my daughter graduate University. Your donations mean I'm able to get to work in the morning and contribute to society through my economic contributions (taxes etc.) Your donations help my mental health by allowing me to be a contributing member of society. Were I to ask them anything... I think the only thing I could ask is how do you think we could get more people like you out there giving?