Rare Disease Day What Does It Mean In Canada?

Today is Rare Disease Day, which is a world wide event and is celebrating its 10th anniversary this year.  Sadly in Canada this day doesn't mean much, even though Canada has been taken part of Rare Disease Day since its 1st year according to the website. Rare Disease Day

Unlike other countries who have many organizations representing people living with rare conditions, we have one organization in Canada to represent all Canadians living with a rare condition.  I have monitored the CORD organization for many years now.  I even contacted them a few years ago, but they are not interested in helping a condition such as the one I have.  Which makes me question their mandate for saying they represent All Canadians with rare conditions? Yet they pick and choose which ones they are supporting? 

If your mandate is all then why don't all conditions count? As it was explained to me if my condition had an official organization then there would be more they could do, there are many rare conditions who don't have an official organization I thought that was the purpose of CORD to be the voice for all, especially those that don't have an organization for their condition?  If it just me that is confused by that responds?

I also look each year at the cities that participate  in Rare Disease Day in Canada hoping to see more doing so each year. We have 10 provinces and 3 territories with a total population of 36,626,083 last time I looked.  Another statistic if you are interested 1 in 12 persons in Canada fall under the rare disease category according to Health Canada's Website on Rare Conditions.  Yet only two provinces participate in any sort of representation of Rare Disease Day, Ontario and BC.  And in a very small way.   

When I tried to contact our local organization for Manitoba's who live with disabilities as some know they could not even answer a simple question as to what they do and what programs do they offer as per their website.   Never mind asking them to help championing our city or province to acknowledge Rare Disease Day.  I am only one person who can't even reach others who live with rare conditions, due to privacy issues.  If someone knows how to make this happen please enlighten me.  My letters go unanswered, I have contacted our government, the College of Physicians, and my city's area councilor.  But I guess we are not important enough but someone has to take up the cause and I will keep fighting until I no longer can. 

Maybe to the average person reading this this might not mean much.  I'll be honest until I became a person who falls into this unfortunate category I too never gave it much thought, other than thank god I was an able bodied person.  We care more about what the latest celebrity is doing.  Where our friends and family are going on holiday's.  Or other situations happening in other countries.  

So today I am asking you instead of talking about the regular conversations you may have. Why not have a conversation regarding rare disease's. There are depending on where you look between 6000 to 7000  known rare conditions in the world.  Why not talk and learn about at least one today.  I'll help you out you can learn about Stiff Person Syndrome (thank you to all my friends who send me information but yet never read the information  yourself you can help me by reading it yourself I live with it every day and am well aware of how it affect my life), Isaac Syndrome, Sclerodema or one of the countless others.  Make today the day to learn something new and maybe help in understanding someone, you or spouse or children know.    

Maybe next year I can get someone to care enough about those of us in Manitoba living rare to acknowledge us for one day! Surely with a population of 1,208,912 and 1 in 12 living with a rare condition then one day for us is not such a big ask?

Celebrate Rare Disease Day!

Here is a list of the events our wonderful county is doing!  So proud of all we do (she says in jest)! Canada let's truly live up to the slogan of Alone we are rare. Together we are STRONG!  http://www.rarediseaseday.org/event/canada/1678

In Memory of my friend Danielle and Missing Your Friendship

Today will mark the anniversary of my best friends passing.  She passed away in 2012 seems like a lifetime has passed since I found out.  She had moved away to BC and when she called me asking me to come visit her, and if possible within that month. She did not tell me how sick she was, she told me she was unwell but not to worry about her.

I told her at the time I did not have the money as we had booked our honeymoon cruise finally after saving up for a few years and we were leaving in two weeks time. (at the time I was still healthy and working).  She was very gracious and asked then would I be willing to come in the spring or summer. I told her at that time nothing would stop me from coming out, and to stay strong and keep fighting like she always did in with her life and I would see her then.  Little did I know that would be the last time I would speak to her.

We went away on holiday and when I got home I tried to call her, getting no answer.  I also sent her a message that went unanswered.  At the time I thought nothing of it nor did I bother looking on her home page as she posted so little.  As the week passed and still no answer it made me start to worry. But at the time I myself was not feeling well which was the week I discovered I had a blood clot in my leg.

Strangely that same weekend two days before I did finally go to the hospital. On Saturday I kid you not I heard a knock on our bedroom window (we live on the 15th floor) so a knock on our window was impossible.  I thought to myself that was weird and I must have been having a dream I could not remember the rest of.  When I got up something told me to look on her home page on social media.  It was there where I saw the posts saying rest in peace, we'll miss you and all other sentiments people say when someone passes.  Shocked to say the least, she had passed away while we were away.

Sadly none of those people knew me and I was not made aware she had passed, she and her family were estranged and her new friends did not know me.  Not a pleasant way to find out, from a bunch of strangers writing on one's wall, that someone you considered a good friend had passed.  At 1st I was angry because she did not tell me how sick she was, and was dying.  But then I realized she had used our conversation of seeing each other in a few months as something to look forward to and maybe that would keep her fighting.  At least that gives me comfort in that thought whether or not it was the case. But I do believe people make plans etc in the hopes it will keep them strong.    

I reach out to a few people who had written on her page, and finally one of her friends did message me back to tell me Danielle had past away as peacefully one can from cancer.    The friend who reached out to me actually was the one that was with her as she took her last breath and that too brought me peace.

Now a lot of people have many friends.  I have a few, but none as close as Dani and I had been. I did not grow up in this city. Most people here went to grade school and still hang with the same people as adults, and makes it a bit hard to open up their circle to new people. They have history and know all about the people they hang out with from a very young age.  For those that know I grew up an army brat back in the days where they moved families all the time.  I lived here for Grade 9 before we were posted again but always came back here because my parents had bought a house here, hence how I ended up living here when my dad retired from the military.

When I moved here the second time a co-worker at the time, invited me to a party and that is the first time I met Dani as I always called her from the moment we met.  How we became joined at the hip was before she came people were talking about her and not in a kind way, but in a very cruel way which I will not repeat. Anyone who truly know me will know I hate and will always stand up for others even in my condition to this day, I have no tolerance for people talking about others especially in a cruel and mocking way, like they were.

When I asked why then was she invited it was because she had gone to school with them and didn't want her to know they had gotten together and not invited her.  Which is what I mean by the mindset of the people that live here.  No disrespect even if you feel I am being that way but why as adults do you still behave as if you are still in school and feel that you cannot pick and choose who you speak or hang with on your own?  It's not like you will see that person at school on Monday.  

Dani and me meeting for 1st time I'm in the sweater with the hearts and Danni is the girl with long hair

I have a lot of time to reflect back and think of people who have come and gone in my life. And for some reason Danielle has been in my thoughts quiet often these days.  Mostly because she and I always were there for each other.  She could call me at 2 A.M. on a work night and I would answer the phone and vice-versa which happened from the time we were 18 and met no matter where each of us were living.

Why am I writing about this and not my illness (which is what my writing is mostly about, but this does have to do with illness because we all could use our best friends in good and bad times.) I wanted you to know Danielle I miss you, I could use a good friend like you were again in my life. I miss our late night calls when life is going crappy and we just needed each other. Thank you for the memories that I can still laugh about the trouble we got into. It brings glimpse's of happiness to me looking back on our friendship during my darkest days. Thank you for being a part of my life. And lastly because I never had the chance please accept my apology for not being there in person when you needed me most.

Love you my friend, until we meet again.

If I only I had known the change that was coming. 

https://youtu.be/YDTei_wdm3U

  


    

The Province of Misfit Doctors

Do you remember the animated special that plays every Christmas Rudolph the Red Nosed Reindeer? And if you do do you remember the land of misfit toys?  Well my husband and I have come to call Manitoba the province of misfit doctors, which would be funny if it wasn't such a sad statement.  We are talking about peoples lives at stake not a game or toy you get tired of playing with  and cast aside or pass onto another person over and over again.  Because you just don't want to do you job or in my case play the game of let's learn and educate yourself like I have done.  I am here to help you try and lead as comfortable and normal life as possible.  

Don't get me wrong I in my journey have had one out of the countless doctors I have seen being one I can say had the expectation any patient goes to a specialist/doctor to one who is doing their job out of concern for the patient and not for the money or to boost one's ego.  As for the rest I cannot say the same.  Unfortunately he passed me onto another doctor whom he thought could be more beneficial then himself.  I wish I could go back to him but once you have been passed on you cannot go back, I have learned.  Since then that doctor past me onto another one, who then passed me onto another doctor who has since passed me back. Like a toy no one wants to have anything to do with.

For any one who finds themselves living in this province I wish you well and hope that you hit upon a doctor that does know what they are doing and are willing to listen to you.  I'm not only speaking because of my situation but also for my sister who the doctors here took years to diagnose with Scleroderma. She passed away but with my recent experiences I am sure because of how long it took them to diagnose her, her life was shortened because again they would not listen nor did they know that with Scleroderma the disease can manifest itself internally, before showing on the outside.  For most diagnosed with Scleroderma it attacks the outside before moving internally and attacking your vital organs.

Our aunt who had a brain tumor/cancer who was told for a year she had vertigo and tinnitus which was causing her balance and dizziness.  The day she was taken to the hospital thinking she had, had a stoke. By the luck of the draw of the doctor on call, they knew it something serious .   Lucky for her they were able to treat her and remove the cancer but had she had waited even a few more days we were told she more then likely would not have survived.

We also have a cousin who kept saying she was having mini stokes after going to a chiropractor and the doctors here kept telling her she was not.  She finally found a doctor in Alberta who did confirm that she was indeed suffering from mini stokes.  Again why did she have to go out of province to find a doctor who could help her and actually listen to her.

I also as some know am currently in a study for a new drug with Health Canada for another medical issue I have.  Part of the study requires a full exam every few months which does include a very basic neurological exam.  Last week I went for my appointment which required a full exam.  Now granted the doctor who does the exam is a cardiologist not a neurologist however if you are part of the doctors in this study you should know how to perform the very basic tests requested in this study. Heck there are countless videos on You Tube with step by step instructions.  I as a non medical person should not have to tell the doctor how to perform these tests but I had to.  If that doesn't scare someone it should.  Lucky for me I knew what and how these tests are done because of how many I have taken but what if I had never been or had these tests?  And the best part is even though I was having trouble with all of them because he did not know what he was looking for he marked them all as normal!

Because of the stress/anger I was feeling about this situation and how my body was moved in directions that anyone who knows anything about Stiff Person Syndrome should not move I started having spasms.  The sad part of all of this is as I walked to the parking lot stopping and doubling over in pain I had medical personal walk past me not one asked if I needed help or was okay.  I finally made it to my car and sat for half an hour screaming in pain watching again medical personal averting their eyes as they walked past my vehicle.  I was within a 5 minutes walk away from the emergency room and could not get myself there.  And could I have would any of them besides myself know what needed to be done?  I wish I could say yes but sadly I know as we have made that trip many times to emergency that the answer was no.  So I sat crying and screaming in pain until they subsided enough for me to take as many back roads as possible to get myself home and to the medication that I knew could help me.  I do carry extra but when you are in that much pain the brain shuts down and too I know I have a short window to drive myself home safely on those meds that even if I could I would not have taken the chance.

That my friends is a small glimpse of life living in the city of misfit doctors.  And if any doctors would like to get a job here the last time I looked on the government job bank site there are taking applications.  As far as I know we are the only province who advertises on the job bank for specialists!   So if you are one that just made the passing grade in medical school not to worry Manitoba is desperate to hire you, just go to their website and apply.  Yay lucky citizens of Manitoba we will always be the province of misfit and uncaring doctors taking care of us!  One more thing to be proud of in Manitoba!

*Since writing this article in Oct. the study with Health Canada has been cancelled. I am publishing this as everything else is still relevant to the healthcare in our province.*

    

Thanksgiving

Tomorrow is Thanksgiving Day in Canada it is a national holiday celebrated in Canada and the United States (they celebrate in November). It was originally celebrated as a day of giving thanks for the blessing of the harvest and of the preceding year.  In current times it is more of a celbration to join together with family for a feast and to be thankful for all one has in life.  As in the richness of family.

For our family it is a bittersweet day this year October 10 as it also marks the day the day we burred one of my sister who passed away in 1999. But it does give me time on this weekend to reflect and be blessed with comfort to have had one of the most caring and thoughtful family members in my life, even though she was taken far too soon from our lives at the age of 42.

When she was ill I would spend as much time with her, going over cooking meals. Taking care of her boys to give her a break and to keep their lives as normal as possible. They have forgotten or were too young to remember all the time I spent with them and that is okay with me too.  I have not forgotten and that is what keeps me happy knowing I helped my sister in her time of need.   She unfortunately had a husband whom was absent most of the time especially once she was ill. That happens much more then people realize when someone they love is sick and especially when you have a terminal illness. Many people would see that as heartless but living now myself with a chronic incurable illness (unless you are lucky enough to be able to try a stem cell transplant) I see the toll it take and how strong a person has to be to take care of the person that they had vowed to love both in sickness and in health. Those are just words one utters when getting married but the true test comes when illness hits. For me I am lucky to have a husband who truly does take care of me, and took those vows and all they meant to heart.

Thanksgiving Day is also a time where most families get together mine no longer talks much to my husband and I.  They don't fully care to understand my illness and how a normal life is out of my reach these days no matter how hard I try.  Although some of them joined together yesterday to enjoy the usual holiday feast we were not invited.  You may think I am bitter or am writing this because I am but you would be surprised to know I am not.  I actually feel grateful for them showing me the type of people I am happy to know we are not.

I am also grateful that on this day I am able to write as it has been a long time since I have felt well enough to sit long enough to do so.  I read so often that in order to keep an audience engaged in your blog you should post often.  My condition or anyone who has Stiff Person Syndrome will tell you that that is an impossible request.  Unlike most conditions we don't have the luxury of having "good days".  That is the cruelness of this condition that so few understand including doctors.  We have a few good hours if we are lucky but days?  I could not tell you the last time I had a good day as it is so far out of my memory I can not pull it from the corners of my mind. 

I will try and write more often but I cannot make any promises, but to those who do engage and read I wish to thank you.  And if you are in Canada may you be blessed with wonderful friends and family who stick by your side, and have a wonderful Thanksgiving Weekend.  

And on this holiday weekend and in memory of a beautiful soul thank you for being a part of my life for the short time we had together.

 
 

Disability Parking Is Not A Privilege, It Is A Necessary To Try And Take Part In Society

This is my first video blog post as it is getting harder to type for any length of time.  My first video blog is on using handicap parking.   The first video was made by Ken Mckim and the next two are my personal experiences on this topic.

I wish to give thanks and gratitude to Ken McKim for allowing me to share his wisdom and passion for the chronically ill. You can follow Ken on his You Tube channel, You can also following him on his website www.dontpunishpain.com and please be sure to follow him on twitter and Facebook @dontpunishpain.

The link for his talk on disabled parking can be found here:

Ken Questions The Chronically Ill and Disabled Parking

*please note my first video I say my second video.  However I re-taped after calming down regarding my family members comment video.  My video's are also taped raw not prewitten they are open and honest how I feel as I am doing them *

My personal experience of being confronted by The Behavioral Police; Strangers and their right of being justified on confronting a person with an invisible illness:

Handicap Parking and Being Confronted By Strangers

Sadly some of us get horrible comments from our own family as this video talks about:
Disability Parking & Empathy

Isolation and Solitude

Again it has been a while since I have written anything. At the beginning of this month  yet another medication was added to the ones I already take and besides knocking me out for 17 - 18 hours a day it was not doing any good so I have told them I will not take it. And began my search for another GP, putting me in a zombie state is not of help to an already desperate situation. Nor was it a medication that offers any benefit to this condition.  

Most days I did not have the ability to do what everyone semi-healthy or healthy takes for granted in their daily life. Prior to stating this latest medication, I at least was able to be awake and enjoy reading people posts, be it on FB or Twitter. Throwing in my two cents for what it was worth here and there. Reading a good book or watching the occasional show I enjoyed. All of that in the span of starting this new medication made even that impossible within the first two days. I was unable to stay semi-conscious for any length of time. But at least I can control that part at least by going off this medication.

I too have not shared but am now letting you know I suffer from short term memory loss or as those with Fibro call it "brain fog" which has made my house full of sticky notes and calendar reminders all over! Many times I have the thought to call. message or email someone and then forget, it's nothing personal. That is just my reality, and I am trying really hard so don't think I am shutting you out. (I had a friend who thought I was ignoring them which rather than assume please ask I won't take offence. You should remember that I was not like that before, so why now that I am sick that thought process has crept into your mind?)  I know I have changed but not my care and compassion for my friends and family. If you feel it has please let me know so we can work it out.   

I also suffer from very jumbled thoughts. What I write is not as clear as it once was more then likely the medications and is part of this condition, I think.  I have read many people asking those of us in our support groups the same questions over and over so I know I am not alone.  Too bad no money is made in really studying this condition, someone could put two and two together.  

Which brings me to the topic of isolation and solitude. Last month I had my flurry of visitors...friends that I had not seen in a while. It seemed at least for a few weeks we were having non-stop visits which now again have ceased. Which is okay it's a pattern which only those who are chronically ill and especially those that are mostly house-bound know and can understand all too well. I say mostly because I am one of the lucky ones who still has some good days up until three weeks ago was able to get out occasionally on my own. I would not dare at this time until my sleepiness and nodding off without warning has diminished.  

See I/we can no longer participate in activities which in our or at least in my case have to weigh the pros and cons of doing so. My healthy friends and family I am sure you think I am ignoring you which is the farthest thing I am doing. But how do you participate in a world from which you no longer have much in common with? It's finding that fine balance which unfortunately until you are forced into the situation cannot fully understand. I struggle with this balance every day.

I would do anything to wake up tomorrow and call someone and say hey let's go out but I don't have the luxury of being able to do so. I no longer know what is happening in your life. Nor can I predict from one minute to the next how my body is going to react, so staying home is safer for me. But that does not mean I never want to hear from you. Or be invited somewhere. I leave you alone waiting for the phone to ring or for you to show up at our door, because I honestly don't know if you are busy, I have been away from your world too long to know. 

And in turn I have had friends say call me and let me know when is a good time to visit you. In all honesty I can't predict when that will be, but one thing I can say is show up I am use to being in pain and would still love your company. (I have become a master at masking the pain I am in, you would think nothing was wrong, unless my lovely muscles decide to put a show on for you. The one thing I have no control over but once over at least you can witness an incredible feat I do for kicks! Just ask any medical profession I've seen they will gladly tell you I have the power to put myself through the pain of having my muscles twist on their own!  Too bad side shows were no longer popular I would have a job again!)

I had a call with a friend not long ago who was starting to tell me of her troubles with a co-worker and stopped in mid-sentence and said "oh, this is so trivial compared to what you are going through". But what a healthy person fails to realize is we need or seek the mundane to remain part of the world. 

 

Just like I/we don't want to always bore you with my/our health but when you shut down the conversation it actually makes us feel worse or at least that is how I feel. Because it is one more reminder that I/we are not part of that world anymore. For a moment put yourself in that place of someone shutting you out. I'm sure it has happened to you before and the feeling was not a good one. I/we face that on a regular bases. Don't forget that we are still humans and need contact. Talking to you what is trivial and mundane gives us reason to feel like a part of the world that we to use to take for granted. Please don't shut us out; talk to us as you use to I guess is all I am trying to get across. We/I have mastered the art and have learned even though I/we are in pain we still want to know how you are too.

My illness should never make you feel like I care less about you or what is going on in your life. It matters to me because you mean that much to me. 

Remember we are still here and although  you may not be comfortable remember those of us who suffer from chronic illness are still trying to finding our comfort zone too. Embrace us and let us still feel like we are still a part of the mundane world.

We all know the saying laugh and the world laughs with you...Weep and you weep alone...well for those that don't know here is the rest of that poem. Both healthy and the sick should take note and help each other to the best of our ability, until we all have to take that final journey alone.

Solitude

BY ELLA WHEELER WILCOX

Laugh, and the world laughs with you;

Weep, and you weep alone;

For the sad old earth must borrow its mirth,

But has trouble enough of its own.

Sing, and the hills will answer;

Sigh, it is lost on the air;

The echoes bound to a joyful sound,

But shrink from voicing care.


Rejoice, and men will seek you;

Grieve, and they turn and go;

They want full measure of all your pleasure,

But they do not need your woe.

Be glad, and your friends are many;

Be sad, and you lose them all,—

There are none to decline your nectar wine,

But alone you must drink life’s gall.


Feast, and your halls are crowded;

Fast, and the world goes by.

Succeed and give, and it helps you live,

But no man can help you die.

There is room in the halls of pleasure

For a large and lordly train,

But one by one we must all file on

Through the narrow aisles of pain.

Giving Hope With Haematopoietic Stem Cell Transplant

Acknowledgement of the content of this post is given with gratitude to Bill Cole, Sam Baar and Anne (last name withheld) who reside in the USA.

There are many people in the world with devastating autoimmune diseases, including Multiple Sclerosis (MS); Stiff Person Syndrome, the extraordinarily rare (1:1,000,000 people) disease that I have; Scleroderma; Lupus; Type One Diabetes; CIDP, and other blood-borne autoimmune diseases.

The most common autoimmune disease is MS. Many people with MS become disabled and wheelchair bound.

Over the past approximately 15 years HSCT (Haematopoietic Stem Cell Transplant) has been proven to be a very effective treatment for MS (and other blood-borne autoimmune diseases). It stops disease progression in approximately 80-90% of MS cases & it can improve prior damage for many people, especially if they receive the transplant early in the course of their disease. Several thousand people with MS have had stem cell transplants over the past 15 years, and based upon the published results, stem cell transplant appears to be the most effective treatment currently available for MS.

Based upon the success of patients with MS (and a few other autoimmune diseases) that have received a stem cell transplant, three hospitals in the United States (the Fred Hutchinson Cancer Center in Seattle, the Colorado Blood Cancer Institute in Denver, and Northwestern University in Chicago), and The Ottawa General Hospital in Canada, have implemented clinical trials to use stem cell transplants to treat people with Stiff Person Syndrome. Approximately 23 people with Stiff Person Syndrome have received stem cell transplants over approximately four years. So far, the preliminary results look very promising, at least for those that received the treatment over 18 months ago. Generally speaking, the results for most patients with blood-borne autoimmune diseases that have been treated with a stem cell transplant are very good.

One of the problems in receiving this cutting edge treatment, is that many neurologists (the type of doctor that typically treats neurological autoimmune diseases) will not support stem cell transplants as a treatment for MS and other autoimmune diseases. (Fortunately, for those that have gone through the trails they were able to find neurologists who were both very supportive of their decision and encouraged them to pursue a stem cell transplant).

Speaking for my situation when I asked about this treatment was told and I quote "you are not seriously thinking about going to a third world, snake oil charming selling clinic who will cause more damage and upon your return I will be left to try and repair the damage they will cause you." I personally am in Canada so am trying to get to the Ottawa General Hospital last time I checked Canada was not a third world country and the team of specialist in Ottawa from what I have read and been told are not snake oil sales people left over from the turn of the century.

And to help clear up misconceptions many here have regarding what it means to have Universal Health Care in Canada we are require to have a referral to another province from both a medical doctor treating you and by your provincial health care provided e.g. MB Health needs to approve the cost to send me. Without both I can go but would risk having to pay for everything out of pocket. Not to mention that in Canada we do not have the freedom to see a specialist without being referred to by a GP (general practitioner doctor) first. So should I take this route on my own initiative I would also be required to move to Ontario find a GP then try and be referred to a specialist. Without following this protocol and going on my own MB Health has the right to refuse my claim sent back to them by another province's doctor who bills them. Not much different than a resident of the USA trying to deal with their insurance companies they are covered under.

Patients with such auto immune diseases can only speculate as to why their neurologists will not support stem cell transplants as a treatment option. Some of the theories that have been postulated are that their neurologists: (1) are uniformed or misinformed about the phenomenal success rates for stem cell transplant, (2) are relying on outdated clinical trial data, and/or (3) perhaps are financially influenced by the big pharmaceutical companies that make billions of dollars each year selling these extraordinarily expensive disease modifying drugs, & it is not in their best interest for people to go into remission from their MS (or other autoimmune diseases) as they will no longer require the services of a neurologist, and so they continue to provide their patients nasty and extraordinarily expensive disease modifying drugs, which might slow the disease progress a little, but will do nothing to halt the progression to disability, and also very often have very severe side effects. (Ps -- many neurologists also receive material amounts of money from these pharmaceutical companies that provide these disease modifying drugs for "speaking fees").

Unfortunately Stem Cell Transplants for MS & other autoimmune disorders remain only in clinical trials in Australia, UK, US & Canada. Unfortunately, it is also very difficult to meet the criteria inclusion for these trials, so many people are not able to receive treatment through these trials. Furthermore, it will also take many years until these trials are complete and stem cell transplants can be performed as a routine procedure that is covered by health insurance.

Stem cell transplants have been available as a treatment for MS and just a few other autoimmune diseases outside of a clinical trial setting in many other countries in the world (such as Germany, Israel, Russia, Mexico and other countries) with less restrictive inclusion criteria. Unfortunately, private health insurance will not cover stem cell transplants in these other countries.

Furthermore, here is a great description written by Sam Baar regarding the recent BBC program on stem cell transplant as a treatment for MS in the link below:

"This is a new 30 minute documentary from the BBC about Stem Cell Transplants for MS. This trial is going on in Chicago, the UK, and other locations. This is slightly different procedure than the Stem Cell Transplant I received in Denver for Stiff Person Syndrome a year and a half ago.

This is well worth watching if you have or know someone with MS or other autoimmune diseases. I expect that it will become FDA approved in the US as a procedure for MS rather than a trial in coming years.

MS is not the only autoimmune disease they are trying to cure using HSTC. Over 10 people have now received this for Stiff Person Syndrome like me and I hope more will! Autoimmune Neuropathy and Scleroderma are a few other autoimmune diseases they have done.

For many people that have become disabled from MS and other autoimmune diseases this is looking like a cure. It can stop the progress of the disease but some damage caused before may not reverse, some will!

This is a long procedure and is almost the same procedure you would have for blood cancers like leukemia.

Please do not confuse these academic FDA approved trials from the endless scams I see out there involving outpatient clinics that offer stem cell injections. These places are scamming people with little hope."

The same can be said for the trials that are being held in Canada

Here is the link to the BBC program:
Can You Stop My Multiple Sclerosis?http://www.dailymotion.com/video/x3n5jjl_can-you-st0p-my-mutiple-sclerosis-bbc-panorama-14th-dec-2015-720p_school