hsct-multiple-sclerosis-stem-cell-treatment

HSCT Multiple Sclerosis Stem Cell treatment

On Sunday night Oct 23rd 2016, the Australian 60 minutes program aired a story about the “Breakthrough” HSCT Multiple Sclerosis stem cell treatment (Haematopoietic Stem Cell Transplant).  Featured was MS trailblazer Kristy Cruise. In 2013 Kristy flew to Moscow and played “Russian Roulette” undergoing HSCT treatment.  Her experience has been a documented success!

If you are yet to see the 60 minutes story, here’s a link to the episode:

 

(PLUS: see Daily Mail link to look back on Kristy’s journey with HSCT, worth the read and watch)

As a person diagnosed with relapsing remitting MS I like to keep an eye on new developments in treatment options.  I  gravitate towards stories of inspiration, healing and wellness. To see that almost three years on Kristy and countless others are doing well after HSCT Multiple Sclerosis Stem Cell treatment is delightful.

To summarise what was briefly touched upon in the seven minute long 60 minutes episode;

  • 60 Minutes demonstrated reluctance to use the “c” word Cure (and rightly so!)
  • Many who have undergone HSCT have experienced regaining mobility or even sight
  • HSCT has shown in many to halt rapid progression of the disease
  • Footage of Kristy pre HSCT struggling with debilitating fatigue. Fatigue that would keep her couch bound for days and requiring a wheelchair.
  • 6 months after Kristy’s HSCT procedure she is out jogging and exercising again (AWESOME!)
  • Ian Callahan, diagnosed at 31 shares a little of his journey with HSCT. Ian, a father of three, was an active, fit policeman prior to being diagnosed with MS.  He bravely went to Singapore for AHSCT and is not looking back!

    The Pain Point of the Story

  • MS “sufferers”, (a label I’m not a fan of), are told to endure 2 to 3 years trialling other drug options first. This is the current criteria outlined in Australia to be considered a candidate for HSCT treatment here.
  • Hundreds of Australian’s have taken it upon themselves to head overseas for treatment because of not wanting to wait for MS to progress as they wait for Australia to move HSCT Multiple Sclerosis Stem Cell treatment out of the “Deemed Experimental” category.
  • HSCT has been used for over 4 decades for cancer patients (making it not such an old, un-tested treatment)
  • Kristy Cruise demonstrates with clear experiential evidence that HSCT helps most people with MS who have had this treatment, improve their quality of life.
  • HSCT Multiple Sclerosis Stem Cell treatment doesn’t work for everyone with MS (**NB the 2% unsuccessful rate and links in the footnotes)
  • KEY POINT AND PURPOSE TO RAISE AWARENESS: HSCT being available in Australia would take a lot of the stress out of the picture. It would allow patients to be close to their support networks, their family, their home not only during the procedure but for their recovery – to heal.

When stories like this air on T.V. what happens?

Our well meaning family and friends rally to make sure their loved one with MS knows there’s “A New Cure for MS, watch 60 minutes tonight!”…

It was ALL over Facebook which is why I chose to break my media ban to tune in.

Some of us decide to automatically make a judgement call it will be a load of “BS” before we’ve even seen it. (I note) Many find themselves closed off because of past experience with similar hyped up news stories. These people actually miss seeing the true purpose behind people like Kristy, Ian and other trailblazers for HSCT. People putting themselves out there to raise awareness.

SEE how MSRA responded in light of the 60 minutes story.

This 60 minutes MS Breakthrough Story is actually a well done seven minute piece of journalism. The message is clear:

HSCT Multiple Sclerosis Stem Cell treatment – We want it to be an accessible treatment option in Australia!

It is a CALL TO ACTION for people with MS to stand up for our first world rights. Germany, Russia, Singapore, the USA advocate and provide specialised haematology units to provide HSCT Multiple Sclerosis Stem Cell treatment units.

Right now, Australian’s diagnosed with MS are being told to trial drug therapies for 2 to 3 years, which have numerous known and unknown side effects and a big question mark as to if they really will work.

Yes, risk is associated with ALL options.  People with MS know this and live with the uncertainty and unknown daily.  Hearing the reports of death and PML. We care about our lives, taking responsibility to be informed where and how we can.

What can we do as people diagnosed with MS?

The way I see it, we can be supporting the MS trailblazers by consciously doing our homework with respect to how alternative MS treatments work.

  • First of all take personal responsibility to know about MS treatment options,
  • Choose to question,
  • Demonstrate this knowledge to your chosen medical physician/s.

Being diagnosed with MS you have rights to better health outcomes. Guinea pigs we are not!  Playing the game of “wait and see” is not the way we want to fight our diagnosis!!

The current option for HSCT is to go overseas, leave our families, our support network and go through what can be a frightening experience with life or death risks associated, right?.  Alternatively, wouldn’t it be better to avoid the unnecessarily stressful experience for patients and their families. Emotionally, Physically, Financially and Spiritually.

The more people diagnosed with MS who can find the courage to stand up and demonstrate our knowledge, our desire, the facts in favour, I believe – the greater the potential to create the shift and the change! Power to the people!!

How do we get the education?

Explore the various support groups who have hands-on and experiential knowledge to the specific treatment options you may be considering.  You will meet real people who have taken the plunge, already done their homework, have gone through the process and are happy to share their knowledge and experience.  Going to the source is the best!

I’ve found closed Facebook Groups, moderated by an admin/s who acts to ensure a positive experience is a good option. Moving Mountains To Defeat MS is Kristy Cruise’s group which is really going direct to the source!

Suggested Go To Links for Australian HSCT and Education on MS Treatment Options

The people over at MSRA are in the know.  My only grievance is the stand out alliance with pharmaceutical sponsors.  Personally a pet peeve of mine. SEE the various MRSA links below for more info:

 Autologous Haematopoietic Stem Cell Transplant for Multiple Sclerosis Background and progress in research – see PDF

Media Reports about Autologous Haematopoietic Stem Cell Transplant (PDF)

MS Research Australia explains AHSCT Multiple Sclerosis Stem Cell Treatment

The OMS book is a treasure of a resource written by Professor George Jelinek, you will find an un-biased review on every known treatment option for MS to date.  I found it confronting when newly diagnosed, years down the track I regret I didn’t read it sooner.

OMS Book: Your Guide to Recovery

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