Autoimmune Diseases and the battle to live, don’t ignore the facts.

Transverse myelitis (TM), Lupus, Fibromyalgia, Scleroderma, Syrogen, Narcolepsy, Crohn’s Disease, Meniere’s Disease, Huntington’s disease, Creutzfeldt-Jakob Disease, HIV/AIDS, Multiple Sclerosis (MS), Rheumatoid Arthritis, Parkinson disease, Alzheimer disease, Huntington’s disease and other Autoimmune Diseases and Severe Mental Illness still lack funds to research genuinely and deeply about their causes, Holistic Medicine; conventional and alternative treatments and therapies ( acupuncture, chiropractic care, homeopathy, massage therapy, naturopathy, ect) and Alternative medicines (marijuana /cannabis)

Life has so many downs and ups..still those at their worst do their very best to inspire and be a change…that’s the case for Rhana Fleming!
Three years back when I was first diagnosed with Transverse Myelitis along with two other autoimmune disorders; Systemic lupus erythematosus (SLE) and  Hemolytic Anemia, unknown in the Mauritian medical vocabulary, Rhana has been a voice and an absolute strength to me and many more via her videos. On 24th August 2016, Rihanna lost her battle against Transverse Myelitis.

For many of us, like me who lives in countries where local supportive group
appropriate medical support and treatments related to our health conditions are non existent, foreign medical researches and exchange platforms are what keeps us alive.

Learn about autoimmune diseases, Donate for medical research and the least you can do is give some warmth and love to those in need.
I just wish that every wish for a cure of all, for all be heard and answered.

Don’t wait for it to be your turn and more life to be lost, to make change.Time can wait, not health.
Starts right HERE AND NOW.

Rhana’s story;

To really get to know Rhana Fleming, you have to watch her how-to gymnastics videos, where the Charlestown 12-year-old teacheed her YouTube audience how to master handstands and cartwheels.

But her world turned upside down when her parents got the call that day in December.

Roughly four hour hours after that, Rhana was at Hasbro Children’s Hospital, paralyzed from the neck down.

“We got a call from the gym that she was sick,” her father Robert Fleming said. “We didn’t really know how sick. We didn’t really think it was catastrophic sick.”

“I said was there an accident? Did she fall? And they said no, we were just doing warm-ups,” her mother Cheryl Fleming said.

It was a sudden, violent nerve reaction in Rhana’s spine that doctors call  *Transverse Myelitis. Rhana has been in the ICU for 25 days. Cameras are not allowed inside, but her father shows ABC6 cell phone videos of Rhana mouthing ‘I love you.’ The tube makes it tough for her talk, especially because she was still in excruciating pain.

Doctors see roughly 30 cases like Rhana’s in Rhode Island each year; however, 90% of them respond to what is called aggressive intervention. Rhana is part of the 10% that, so far, has not.

“We just don’t understand the process well enough to handle it,” Dr. David Mandelbaum, head of the Neurological Unit at Hasbro, said. “90% of the time we do, but with that 10%, there is just so much unknown.”

They did not know if Rhana was to walk again. They were trying to figure out whether or not any of this may be the result of her immune system over-reacting to an infection that had already passed.

But instead of harping on the unknown, Rhana’s parents have been pro-active, setting up a website to raise money for her care: http://www.rhanasjourney.com/
They were focused on their little girl’s spirit because even in the hospital bed, she has made them laugh out loud at her jokes and quietly cry at her selflessness. They realized that their little gymnastics teacher has a whole lot to teach them about life.

 

* Transverse myelitis is a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. The term myelitis refers to inflammation of the spinal cord; transverse simply describes the position of the inflammation, that is, across the width of the spinal cord. Attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body.

Please help With Rhana’s Medical Bills
https://www.gofundme.com/rhana

 

 

You have endured what was unbearable with a smile always on…and I’ll carry that same smile until we meet again…Rest in peace fighter ❤Rhana Fleming!

Patients or have family, friends suffering from chronic&rare diseases, check this survey.

After ten years of wrong diagnosis, with the help of a private doctor, I could finally put a name to what i have been suffering for real. Here is the links of the struggle of most who suffer from rare medical conditions;

https://anshikasawaram.wordpress.com/…/medical-institution…/

https://www.facebook.com/photo.php?fbid=10203690198246102&set=a.1503231591375.2064867.1551803088&type=3&theater

https://www.facebook.com/photo.php?fbid=10205680741448438&set=a.1503231591375.2064867.1551803088&type=3&theater

https://www.facebook.com/photo.php?fbid=10205905312062563&set=a.1503231591375.2064867.1551803088&type=3&theater

https://www.facebook.com/photo.php?fbid=10205996323577794&set=a.1503231591375.2064867.1551803088&type=3&theater

In this quest, I vowed to learn and research about Transverse myelitis and Systemic Lupus Erythematosus to better help those sailing the same ship as me.

After I publicly came out about my medical conditions,(https://www.facebook.com/photo.php?fbid=10203615819506680&set=a.1503231591375.2064867.1551803088&type=3&theater ), I am more often contacted by people who feel and live the same on facebook. Most of the times, I have benefited from lending an ear and a hand as this is how I achieve my goal, that of building an awareness community about invisible diseases

I am inviting and requesting Mauritians who are patients, have a family members, friends or acquaintances who suffer from chronic and rare diseases to please answer this survey on http://www.diseasemaps.org/en/. I will be so grateful and thankful , as this data will be of great help for coming projects.

You can choose to answer anonymously and get in touch with me via facebook, about anything related to the same issue.

Thank you and take care.

Medical institutions and services, which cost you your life

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For about 2 years now, mysteries on the loss of my bone marrow, bone densitometry and Anti Nuclear Factor tests remain unsolved. Our public medical services are so free that without a final diagnosis, you get free treatments as ‘COBAYE’ (administration of medicines by trial and error). And some business doctors have adopted and practice that kind of private consultation to.
Seeing the urgency for resolving certain mysteries, most of the patients (undiagnosed and chronic patients) choose to look for medical advice and treatment abroad.

Well fortunately I am one of them. Let’s see the cost benefits of each.

Mauritian medical service costs.
1. Public sector:
  • Cost you a minimum for Rs 35 (Transport fee by bus)
  •  You have bonus services. ‘ Rentre ek enn maladi, traiter pou enn lot maladi ek ou sorti ek enn lot maladi’
  •  Most specialist doctors are business doctors. ‘ou trouve zot plis dan klinik ki lopital dan ler kot zot sipoze ape gete pasiyien dan lopital.’
  •  To benefit for medical facilities (e.g crutches, wheelchairs), you need to have acquaintances working in there to be amongst the beneficiaries. ‘Sinon ou gagne baton mope Rs20 et 1 boute karotsou Rs5 pou ou debrouyer.’
  •  While your butt is hurting after hours sitting or standing to receive medical assistances or services, there are some ‘high profiles’ after a second of apparition, getting all the needed attention without any delay. ‘Nouvo kaliter service ‘first come, last serve’
  • Sometimes while queuing for free medications, it happens that the medication store runs dry because ‘mister or miss high profile’ have been asking for a huge stock of medication not corresponding to that prescribed. ‘kaverne Alibaba gette figir pou li ouvert.’
  • The public health sector is so well maintained that we have the oldest of all machineries or no medical equipments at all, for instance in the case of diagnosing rare diseases.
  • We are so a modern medical hub, that sanitary issues are not respected and monitored; disposal of used medical equipments, rodents, dirty toilets and bed sheets,ect. ‘ Kan nerse ek infirmiyier okiper ar fer palab, lerat, pizon, mwano vine ran ou visite pou gard ou moral en alerte.
2. Private sector
  • Cost you a minimum of Rs 1000 (Transport fee + consultation)
  • Medication prescriptions are easily available, that you must check in your pockets four times before ordering your stock. ‘servise la farmasi koute pli ser ki konsiltasiyon’
  • Private doctors are now easily available on catalogues that you are afraid of knocking at the wrong door. If you are lucky enough to get one consultation, you need to make your booking 2 months before.
  • Whatever you consume you pay, well of course it’s a private sector. ‘Rs2 roupi enn goute lalkole a monter’
  • Also befriends the above mentioned points in the public sector, point 1 and 2
3.Abroad Medical costs
  • Cost you a minimum of RS 50,000 (Travelling fee+ consultation)
  • Additional costing for test and analysis as from Rs 25,000
  • Medication minimum fees around RS 10,000
  • Best technology, Modern research and upgrade knowledge of diseases
  • Normally takes you too much of time before arranging for finance, a place to stay and to get into contact to a doctor.

Those above mentioned points are not only facts from me but also of many with whom I had a chance to meet and share my days of stay at several public and private medical sectors of the island. I have now a heavy past medical report that I am confused at times, of what’s the real matter in me. Each time I go to the public hospital for follow up, I always end up with an issue added up to my medical report from chronic migraine to thyroid issue, to tumeur, to cardiac problems, to cancer and recently to renal failure, WHEN NONE OF THEM IS YET AN ISSUE IN REAL according to foreign expertises.

For about one year now, I’m in and out of the country just to be on the safe side. Whenever I’m not in condition of travelling, I go round the medical services with my private reports just to be sure that i’m not made a ‘cobaye’ again. But it’s not always a relief as not later than yesterday, even if I had my private medical reports on my person, stating the appropriate treatments and medications for my medical conditions, these were not followed and most of the time I face same issue in our medical services.On top of having Systemic Lupus Erythematosusi &co, transverse myelitis and Aplastic anemia, I am now laying flat like a stale legume! Do we have professional doctors or evil clowns in our medical institutions? Is this the Medical Hub?

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Inexperienced nurse, pricks seven times, for a single vein transfusion leaving painful blood clots.
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Wrong administration of antibiotics through intravenous ,resulting to blood patches on whole of the body.
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Now, laying flat connected to this machine for a 24hr service for 2 days

I wonder how many lives were lost due to medical ignorance, poor delivery of medical services and worsening of medical conditions due to ignorant and business minded doctors. How can one living on a pay of rs500 per month afford to have a medical service worth its name? Why for petty health issues Mister Navin Ramgoolam had to fly to England for treatment and Mister Paul Berenger had to go for diagnosis and treatment for a so called cancer in France? And why we MAURITIANS should trust the local medical services if Mister Ramgoolam and Berenger refused to benefit what they offer?

Like I did mention in one of ‘Jeune Patriote Mauricien’ press conference, you don’t need to be a chronic patient to witness, it’s the story of common people like you and me.  Five years before I was diagnosed as a chronic patient, as an activist along with Jameel Peerally and other friends in AzirMoris, we brought the issue of medical care management of the Cancer ward at Victoria Hospital to the attention of concerned authorities and public members.

In memory of Christophe Triton and all those who lost their battle against this dirty system.

Failure in medical care management, sanitary maintenance and medical assistance of the Cancer ward at Victoria Hospital, was the fight of one amongst our members, a brother in arm, a fallen soldier at the age of 23, Christophe Triton who was a leukaemia patient. Click on the photo below to has access to his report written during his last few days at the hospital.

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Click on the photo to have access to Christophe Triton’s Report

During our continuous visits in several hospitals and the endless fight to call for the attention of the blind and deaf authorities, below are the video links (in red and underlined) of our onsite actions, investigations and report findings.

1.On site visit, Christophe Triton and testimony of Christophe’s aunty about health care provision, assistance and failures.
2.Candle light in memory of Christophe Triton and all those who were victims of our medical care system.
3.The deaf and dumb authorities
4. This is the help aid that I received at the public hospital, a useless simple wood support instead of a crutcher,  when I lost about 85% of mobility in 2013

I still share and witness the same..
1.Urvashee, a newly wedded bride, aged 28 who lost the battle against Aplastic anemia along with aggravated lupus
2.Christabel a college student, aged 16 who lost the battle against acute Disseminated Encephalomyelitis along with thalassemia
3.Didier, aged 20 who lost the battle against leukemia
4.Ravi, aged 35 who lost the battle against fibromyalgia
5. Sweta, 18 of age who lost 97% of mobility still fighting against Systemic Lupus Erythematosusi and transverse myelitis. That list goes on and on and never ends!   

I doubt no more, OUR MEDICAL SERVICE IS MUCH MORE SICKENING THAN ANY CHRONICAL DISEASE! It is hard to talk about a middle ground for something that is a fundamental right. In my opinion, our healthcare system has failed when a doctor fails to satisfy that eternal human need for hope of relief, sympathy and that something should be done, which is felt by those who are suffering.And a warning to those peeping toms having for name as NGO, stop making a name upon the sufferings of many!