Jack Osbourne describes MS diagnosis as his “scariest moment”
Jack Osbourne talking in the video about his own diagnosis of multiple sclerosis. He also introduces us to the work of the MS Society and talks to people with MS.
Check it out below!
Stem cells and multiple sclerosis
An international study evaluated long-term outcomes from bone marrow-derived stem cell transplantation (autologous hematopoietic stem cell transplantation – HSCT) in 261 people with different forms of MS.
The transplants took place between 1995 and 2006, with a follow-up period of up to 16 years. Several different transplant protocols were followed.
Results suggest that after 5 years, 46% still had not experienced any progression or worsening of symptoms, including 73% of those with relapsing MS and 33% of those with secondary progressive MS. Eight deaths (2.8%) occurred within 100 days of the transplant. Most of these occurred during the early development of the procedure; improvements in patient selection and transplant techniques have significantly reduced the mortality.
Those with the best outcomes tended to be younger, had relapsing MS, lower accumulation of disability and had used fewer MS therapies prior to the transplant procedure.
Additional research is needed to better understand who might benefit from this procedure and how it compares to the benefits of powerful immune-modulating therapies now available.
The study, by Dr. Paulo Murano and colleagues, was published online February 20, 2017 in JAMA Neurology.
Background: HSCT (Hematopoietic Stem Cell Transplantation) attempts to “reboot” the immune system, which is involved in damaging the brain and spinal cord in MS. In HSCT for MS, hematopoietic (blood cell-producing) stem cells, which are derived from a person’s own (scientifically referred to as autologous”) bone marrow, are collected and stored, prior to depleting much of the immune system using chemotherapy drugs. Then the stored hematopoietic stem cells are reintroduced to the body. The new stem cells migrate to the bone marrow and over time reconstitute the immune system.
This Study: Researchers from 25 centers in 13 countries collaborated to evaluate the long-term outcomes from bone marrow stem cell transplantation (autologous hematopoietic stem cell transplantation – HSCT) in 261 people with different forms of MS. The researchers were part of the Multiple Sclerosis-Autologous Hematopoietic Stem Cell Transplantation Long-term Outcomes Study Group. The transplants took place between 1995 and 2006, with a follow-up period of up to 16 years. Several different transplant protocols were followed.
Characteristics of the participants varied widely in terms of age, amount of disability (as measured by the EDSS scale), and type of MS. Most had tried two or more MS therapies. More than 75% of the participants had progressive forms of MS at the time of the transplant, mostly secondary progressive MS but some with primary progressive MS.
Results: Results suggest that after 5 years, 46% still had not experienced any progression or worsening of symptoms, including 73% of those with relapsing MS and 33% of those with secondary progressive MS. Eight deaths (2.8%) occurred within 100 days of the transplant; most of these occurred in transplants made before 2000. Improvements in patient selection and transplant techniques seemed to have lowered the risk for mortality in subsequent years.
The investigators reported that those with better outcomes tended to be younger, had relapsing MS, less disability at the time of the transplant, and had used fewer MS disease-modifying therapies prior to the transplant procedure. By contrast, those who tended to experience MS progression after transplantation tended to be older, had progressive MS, and had tried more than two disease-modifying therapies prior to having the transplant.
Researcher Paolo A. Muraro, MD, PhD (Imperial College London) and colleagues published their results in JAMA Neurolology, published online on February 20, 2017.
This study was co-funded by many agencies including the UK Multiple Sclerosis Society.
“This is one of the larger studies to date that observed long-term outcomes of HSCT in MS,” says Bruce Bebo, PhD, the National MS Society’s Executive Vice President, Research. “Well-controlled trials are needed to better understand who might benefit from this procedure and how it compares to the benefits of the FDA-approved disease-modifying treatments that are now available.” A phase 3 trial of HSCT is now in planning stages. The Society is engaged with the team planning the trial and is encouraging quick action to design and launch the trial.
Types of multiple sclerosis
According to the UK’s MS Society “24% of people with MS say their employer has treated them badly as a result of their condition, and a fifth say their colleagues have.” This is according to their latest survey findings, which investigated discrimination at work for PwMS.
And “Of the people who say they have faced mistreatment from their employer, 91% say their employers knew they had Multiple Sclerosis. And 85% who faced mistreatment from their work colleagues say their colleagues were aware of their MS.
In the survey, people shared many distressing experiences of mistreatment. These included facing offensive and humiliating comments, feeling bullied and being accused of looking too well to have an illness or disability.
People also say they have lost out on promotions, been forced out of work unfairly and had requests for reasonable working adjustments denied.”
Michelle Mitchell, the Chief Executive of the MS Society shared “Our survey clearly shows the need for a shift in attitudes to better support people with long-term conditions and disabilities to stay in work. It’s disturbing to hear so many accounts of people being bullied and mistreated at work because of their condition, especially as people with MS are protected against discrimination under equality law.
“We know that some people with MS absolutely won’t be able to work because of their condition, but for those who can, simple adjustments and supportive employers can make a huge difference. We want to see more positive workplace cultures that value the important contributions that people with MS can make.”
So what about you?
Have you suffered from discrimination in the workplace because of your multiple sclerosis? Why not take our poll below.
| TimDyer | I was a Union electrician. After my DX I got a phone call from our local President. He said “well, you can’t be on boom lifts or 20 ft ladders, and we can’t sell you as a full fledged union electrician anymore. You should go on Disability”. He gets a pass because I got worse, but he’s still an asshole in my book. |
Lisette HARVEY
She says ” I have been touched by the devastating effects of MS after losing my brother-in-law, Daren Davies, aged 39.
I have decided to start this challenge to support those suffering from this disease and to contribute to the fundraising for medical advancements to find a cure.
I commit to spending the next 14 months challenging myself by way of running, walking and other activities that push me out of my comfort zone.
Please support in any way you can to fight this life changing illness that impacts on all involved with MS.
Thank you!!”
Ms Harvey has set up a Just Giving Page here. Please do give generously to this important cause!