A second chance at life after a diagnosis of Multiple Sclerosis – Day 2 at TMM 2017

Author: Hamideh Emrani, 11/16/17

Jennifer Molson at TMM 2017

Imagine your hands lose their control and, all of a sudden, the glass of water you just took from the fridge slips and shatters on the ground. What could it be? “It is probably carpel tunnel syndrome,” says your family doctor. But you experience more problematic symptoms like double vision and loss of balance and, after more tests, are diagnosed with Multiple Sclerosis (MS). This is how Jennifer Molson’s MS was diagnosed when she was just 21-years-old.

Multiple sclerosis (MS) is an autoimmune disease where the immune system goes awry and recognizes the oligodendrocytes of the nervous system as foreign invaders. Oligodendrocytes are cells in the central nervous system (CNS) that produce myelin, a fatty insulation that insulates and protects axons (wires of our nervous system) like the insulation around electrical wires. Damage to myelin results in short circuits and problems relaying information in the CNS. I’ve written more about MS here.

Most MS patients start off in a long pre-clinical period, which due to lack of symptoms is mostly unrecognized. But the damage is accumulating and with the first sign of symptoms there would be episodes of attacks and relapses, followed by episodes of remission and repair. This is called the relapsing remitting MS (RRMS). Eventually, the sustained accumulation of attacks results in permanent damage and progressive impairment of the individual, which is called secondary progressive MS.

It is that middle part, the RRMS, that drug companies focus on. There are many drugs that both reduce the number of flare-ups and slow the advance of MS. They can’t eliminate relapses, but they space them out. These drugs aren’t a cure, so even though many patients have suppression of relapses, they still enter the secondary phase of the disease.

Jennifer started with RRMS and had an almost normal life while taking medications. She experienced relapses throughout the years, but it was always followed by episodes of remission. After five years, she had a severe relapse episode and her health began to decline so rapidly that she needed help with her basic daily functions such as walking, bathing and using utensils.

That is when her neurologist, Dr. Mark Freedman, introduced her to a new experimental treatment that he collaborated on with Dr. Harold Atkins. For this treatment, they would isolate stem cells from her blood, obliterate her immune system with intensive chemotherapy, and re-inject her stem cells. They hoped that the blood stem cells would reset her immune system and the new one would not attack her brain. You can read more about it here, along with an interview with Dr. Harry Atkins.

The procedure sounded promising in theory, but there were huge risks involved (that were clearly outlined to Jennifer). There was no hope for a fix to the damage that the MS had already caused. The best Jennifer could expect was that the treatment would stop her MS from progressing. Jennifer was at such a challenging physical state that she decided to take a leap of faith and try the stem cell treatment.

The procedure was not an easy one for Jennifer. After receiving the chemotherapy, she had to deal with the terrible side effects the drugs caused, and she had to spend many hours and days in the hospital before her new immune system was ready. She had to get multiple vaccines and re-train her brand new immune system, just like they do for a newborn. In all, 23 more patients tried the treatment, but unfortunately one passed away due to toxicity reactions to the chemo treatment.

Surprising to Jennifer and her doctors, not only did Jennifer’s MS stop, but she began to see some repair. After having impaired balance as a result of her MS, two years after receiving the transplant she walked into her neurological appointment wearing high heels.

Now, it is 15 years after the procedure and Jennifer has been able to participate in activities that she never thought she would be able to enjoy again, such as hiking and kayaking. “I have gained my independence and I am living proof that research can successfully change lives. I have been given a second chance at life,” said Jennifer at the end of her talk at the 2017 Till & McCulloch Meetings.

I am extremely thankful and in awe of Jennifer’s bravery to have gone through the treatment and for sharing her story as it offers insight on the impact of research on the lives of patients.

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Hamideh Emrani

Hamideh Emrani

Hamideh is a scientific communicator and the founder of Emrani Communications, serving clients in Toronto (University of Toronto) and California (Stanford University). She earned her B.Sc. in Cell and Molecular Biology at UC Berkeley and finished her M.Sc. at the University of Toronto (U of T). She was an intern at the Carnegie Institute at Stanford University, honours research student at UC Berkeley and has won awards for best podium and best poster presentations at the Faculty of Dentistry and IBBME at U of T. She is passionate about science and loves to talk and write about it. You can follow Hamideh on Twitter at @HamidehEmrani.
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