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RARE DISEASE SUFFERERS say it is like banging their heads “against a brick wall” trying to get specialist treatment in Ireland – and that some doctors have thought they were making their symptoms up.
Ehlers Danlos Syndrome
TheJournal.ie spoke to three women who have Ehlers Danlos Syndrome (EDS) a rare, lifelong progressive disease.
Two of the women are a mother and daughter, while the third woman was told she was a hypochondriac before she was diagnosed.
(Rei Haycraft/YouTube)
Ehlers Danlos Syndrome
EDS is an inherited connective tissue disorder, and it has a number of different types, each of which have different symptoms.
In the family we spoke to, the mother and daughter are affected in different ways and the daughter has more serious symptoms, including postural orthostatic tachycardia syndrome, which can make her pass out when she stands up.
EDS has affected her immune system by attacking her bone marrow, and she has had meningitis, septicaemia, e coli and numerous life-threatening bacterial infections and viruses.
She said she needs to go to the UK for treatment to determine if she has Lupus or a mast cell condition so that she can receive further treatment.
Diagnosis
The family want to raise attention to the fact that EDS is not just about hypermobile joints – it can involve joint pain, muscle weakness, chronic pain, dislocation and infections.
This young woman was in her teens before she was diagnosed in the UK over a decade ago, after years of repeated fractures and dislocated joints.
“Doctors seem to think it’s in your head,” said her mother of EDS symptoms.
She went in a wheelchair to the UK and came home walking after five weeks of treatment.
Medical professionals
With EDS, “you need a full medical and multi-disciplinary team” who know how to manage the condition, said the young woman’s mother.
She said the connection hasn’t been made by Irish medical professionals yet between the multitude of conditions that people with EDS can have.
Her daughter deals with various health professionals but “none talk to the other or coordinate her care”.
Treatment abroad
They have been told that “unless you’ve a specialist here in EDS to say you need to have a specialist in the UK”, they won’t be funded for treatment abroad. There is no EDS specialist in Ireland, they say. It is a “catch 22″ situation, said the mother.
They are now looking into fundraising to help them travel abroad, as they believe they are unlikely to get HSE or VHI funding.
For this family, the mother said: “You feel like there isn’t the understanding – that you’re really banging your head against the brick wall.”
(C) shows collagen in a patient with EDS, while (A) shows normal collagen. Pic: Wikimedia Commons
The daughter told TheJournal.ie:
Even though at one end the expert care you need is over there [abroad], at the same time the VHI and the treatment abroad scheme are basically blocking it at very turn.
She said people with EDS are "being left here to basically rot, that’s how I see it". "They're not being able to access what they really need."
Though she is working, she sometimes feels that she would be better off unemployed as she has lost her medical card. She was given it on discretionary grounds, even though her health has deteriorated in the meantime.
They’re taking it off people who really don’t have a voice. People who are so sick they are not in a position to fight it.
She described it as "ridiculous" that she and other families are being encouraged to fundraise for their treatment. "We have to rely on other people’s charity to get me the medical help I need."
She said that in her experience, not every doctor knows about the condition, and if they do they don't understand the debilitating affects.
There’s days when my partner has to be carrying me around the house, which is a humiliating experience for any person to deal with.
She said that EDS sufferers want doctors to be educated about EDS, they want treatment here in Ireland for it, and they want the proper services here for them.
"I really feel like they’re telling me my health is completely deteriorating and it’s completely serious and yet it’s being left," she said.
"Is there going to be a fatality among us of someone dying from that before it is taken seriously?" she asked.
It's an "invisible illness", she said. "You don’t get the same sympathy as you would from people." Some times, sufferers have a "blaze of energy" and other days are in a wheelchair, leading to people looking at them "like they’re a fraud".
"I was told it was all in my head"
Yvonne Evans-Nevin (27) is a health journalist for the Cork Independent who discovered she had EDS after interviewing a woman in 2012 with the syndrome. After recognising some of the symptoms the woman had, she realised she might have EDS too.
"For the last 10 years I was told it was all in my head," she said. "I was told was depressed, I was put on anti depressants."
"I’d gone for every single blood test, and x-rays and nobody could explain why I was feeling pain. The doctor said 'you’re depressed, it's all in your head'". After fainting at home in 2013, she went to a doctor in Cork at was diagnosed with EDS.
She now works with the EDS support group, EDSAI, and has realised that her story is not an uncommon one.
Anybody I’ve spoken to through support group, their doctor at some point has said it’s a physical manifestation of a psychological problem.
The diagnosis came as a relief, but she had to face the fact she has a progressive lifelong illness.
"If I had been treated earlier as a child I probably could have led a very normal life," she said.
Her son is now showing signs of the syndrome, and she said that "the difference between myself and him is at least when he is complaining about pain he is not going to be called a hypochondriac".
A lot of EDSAI members have had to fundraise for treatment abroad, said Evans-Nevin.
She advises people that if they are having symptoms such as unexplained pain or fatigue, "don’t let doctors tell you it’s all in your head because it’s not. There’s a reason why you’re in pain."
We're all entitled to be treated and be looked after mand not live every day in pain and be questioned whether this is real or not.
"It’s not a rare disease - it’s rarely diagnosed," is how Evan-Nevins put it. "We reckon there's another 900 people in the country if not more with EDS."
The EDSAI support group is open to new members.
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My sister also suffers from EDS and it is such a debilitating disease. There is a specialist in London who she has been referred to,but she has been waiting MONTHS to find out if treatment there will be covered by her health insurance. I have done fundraising for Irish Heart Foundation,Barretstown Camp and a few others.. I am thinking I will have to do some fundraising for my sisters so she can get treatment. The doctors & nurses here do their best but if a doctor has referred a patient on to another doctor as the syndrome is outside of their area of expertise I cannot understand why they will not cover the treatment. Beyond frustrated watching my sister suffer.
And what about lyme disease no help from the medical profession in this country. My wife has Lyme and is very very sick but unfortunately we have to pay to get treatment in Germany.
I don’t have EDS, but I do have Chronic Lyme disease since 1995.
Lyme disease ( infected Tick Bite)in itself is treatable if diagnosed and treated early
.Unfortunately, when left Un treated it results in a serious Chronic illness, not recognized here.People have to borrow money to go abroad for proper diagnosis and treatment.
A meeting with the Oireachtas Health committee was held last Nov. Maybe a task force will be set up at some stage !!!! Meantime very ill people are trying to fundraise/ Borrow money to try to get better.
Disturbing article but not an uncommon story.
It’s truly shocking that someone with such a debilitating progressive disease has had her medical card taken from her, but then not to find the specialist care in this state and be denied funding for treatment abroad. The last thing anyone battling with illness needs is to be fundraising, how callous and uncaring has this government become? Has the Troika given them carte blanche to disregard the basic needs of the citizens of this state, have they forgotten who they have been elected to serve?
Also those suffering from common diseases are left to root. And the GPs, nurses, all the workers in the health system… The HSE is the perfect script for an horror movie. It is expensive, corrupt, underperforming… I don’t think Ireland can fix it at this stage, it needs EU intervention because it is clearly failing to guarantee one of the most basics human rights.
This country would just make you vomit, all the tax, insurance and levys we pay but still we have people dying waiting on ambulances, trolleys, and waiting years for diagnostics, and not to forget the thieving of money raised from charity’s, meanwhile we have to look and stomach them corrupt tools up in the dail with inquiry after inquiry, scandal after scandal insulting our intelligence telling us that we have turned a corner, God help you in this country if you get sick and are not well off or need any sort of help in general you’ve had it!
I sit on a man’s back, choking him and making him carry me, and yet assure myself and others that I am very sorry for him and wish to ease his lot by all possible means – except by getting off his back.
Leo Tolstoy
100 green thumbs for Patitas & Jack’s comments….
This is the unwritten national policy in ‘Austerity’ Ireland, in every single public service department – if you are at the margins or have a minority problem, officials will do the utmost to deny you your entitlements to health & welfare services.
It is a ‘numbers’ game – small numbers of people are considered disposable – cynically & deliberately left to their own devices & in some cases actually die for want of services that they should be getting.
Meanwhile the most senior public officials and politicians continue their snouts in the trough of pay, expenses, perks, rolls royce pensions etc. uncaring & undisturbed.
Besides the obvious & inhuman way spending is prioritised – the top few percent continue to increase their wealth – the lack of aggregate wealth produced through deliberate economic policy that prevents at least 20% of our available workforce from working is further proof that virtually none in the senior positions of public service should remain in post any longer.
20% plus unemplyment – lack of jobs, and consequent aggregate wealth produced – is a deliberate policy choice. There is never, by definition, a shortage of ‘fiat’ currency which could be issued free gratis to stimulate the Euro economy to (near) full capacity. In monetary terms a mere few percent of GDP is all that would be needed.
Good morning Mick.
I’m glad to see that the magic money tree has survived the winter storms.
As for small numbers of people being disposable I’m not so sure. Entire generations have become the victims of successive neo-mercantilist big-government administrations.
It’s doing well Sean in fairness producing €8 billion a year in payment to our friends in the EU and IMF. Maybe some of that growth could be trimmed off and redirected to those Irish citizens who need help?
MMT is creating €8 billion a year for the EU and IMF ??
Well done!
No Sean that €8 billion is being created off the backs of Irish workers and citizens while some can not be treated medically for their illnesses. Not something to be proud of it your an Irish citizen I’d actually suggest…
The usual ignorant commentary from you, O’Keefe
Near ALL modern money is created from thin air on computer keyboards, so only someone peddling an ideological agenda will call it a ‘magic money tree’.
The topic is +macro+ economics & the monetary system, not ‘household’ budgeting where individuals are +users+ not +issuers+ of the currency.
Again, for your ideological agenda, you prefer that people do not understand the difference between money issuance at the macro level & household finances.
Whilst you never explicit yourself – even you know it is a shameful, sociopathic ideology – let us summarise your ideology for readers….
You Mr O’Keefe never have anything supportive to say about the most vulnerable, disadvantaged or least capable in our society. You don’t care if people live or die. You epitomise selfishness & greed & this is the motivation for everything you communicate here.
So, we know all money is created from thin air (as the Bank of England have themselves finally admitted publicly).
The question then remains, in this man-made structure of the money creation & banking system… in whose interests is the system of money creation operating?
Well, it is obvious from the causes of the Financial Crisis & the decisions taken by authorities since, that the money system, most especially the Euro system, operates in the exclusive interests of the top few percent, bankers & other wealthy elites & their pet political classes, and at the cost of mass unemployment, consequent under utilisation of capacity, & lower living standards for the vast majority of citizens.
MMT, as part of a ‘Post Keynesian’ macro economics academic school suppressed by elite (money) interests for over 60 years (back to the McCarthyite academic purges of the 1950s), explains the truth that quite small sums of prudent money issuance spending, in the public interest, can be used to both stabilise an inherently ‘laissez-faire’ unstable economy & ensure (near) full employment & minimum living standards for all.
This, Mr O’Keefe, is what you hate most about MMT.
Well who’s got out of the wrong side of the bed this morning? Perhaps you should have treated yourself to the extra hour in bed Mick and spared the rest of us your vitriol and Jim Corr-ish rantings.
There was no such thing as MMT during Senator Joe McCarthy’s purges (the clue is the word ‘modern’). And to associate MMT with academic research is a bit of a stretch (particularly 1950′s research).
Your premise that money is created out of thin air is not correct. Since the abandonment of Bretton Woods (by the Keynesian Richard Nixon) most modern currency is now created as debt (i.e. we have a debt based money system not a fresh air money system)
http://www.peakprosperity.com/crashcourse/chapter-8-fed-money-creation
Again your reliance on ad hominem and failure to reference credible sources for your rantings lets you down Mick.
Perhaps an afternoon nap would find you in better form.
O’Keefe
Direct quote from your link….
“…..Now, where did this money come from? Glad you asked. It comes out of thin air…..”
Which directly contradicts your own statement…. “….Your premise that money is created out of thin air is not correct….”
But such plain stupidity from you is not surprising because everything you write here is driven not by ‘facts’ but ideology.
As I said, in whose interests this ‘thin air’ creation system operates is a matter of political choice……
BTW, the monetary principles in MMT are Post Keynesian, a school of thought that goes right back to Keynes himself and his contemporaries & collaborators…..
Amongst others, they were the ones who were sacked and purged from US Universities in the 1950s, by the McCarthy ‘un-American Activities’ movement (essentially, fascist banking-military-industrialist
interests).
One of the textbooks removed was by Lorie Tarshis….
“…..He is credited with writing the first introductory textbook that brought Keynesian thinking into American university classrooms,[1] the 1947 The Elements of Economics. The work swiftly lost popularity after it was charged with excessive sympathy to communism by McCarthyist activists….”
‘Lost popularity’ here is the euphemism for forced removal under threat of McCarthy blacklisting (with everything that meant for thousands of academics across the entire US University system…).
http://en.wikipedia.org/wiki/Lorie_Tarshis
Notably, precisely NONE of Keynes opponents in academe, Hayek & all the rest, spoke out against the McCarthy purge….. that is because their political ideologies were much the same.
Tarshis’ textbook was replaced by Samuelson’s version of Keynes that attempted to deny the +macro+ economic basis of all Keynes work, that by the empirical evidence of the 1920s onwards completely validated the vital distinction from ‘micro’ economics that Keynes is credited with.
Samuelson’s textbook, still in use today, in common with most others in current use, is directly contradicted in it’s description of money and banking by the Bank of England’s recent statements.
Macro economics based on a false view of money and banking has produced exactly the results we see today. A system that increasingly transfers wealth and income from the majority (labour) to the minority (capital owners) unless Governments step in and regulate.
But what we are seeing now is the accumulation over decades of the purchase & capture of the people & institutions of democratic government, to the degree that majority citizens’ interests are not meaningfully represented at all.
The ‘macro’ counter-cyclical policy options for governments were all but removed by ‘neo liberal’ economics/ideology design in the Euro system. This is why Euro zone joblessness remains more than twice that of comparable countries that have their own sovereign currency (US, UK etc.), 6 years after the GFC bust & counting….
But, you, O’Keefe, care nothing for this. Your beef is that you are one of the lower level capital owners scared about your own wealth diminishing, believing yourself ‘better’, ‘more deserving’ etc than the rest of us, in a system that you have just realised is based on Big Fish Eat Little Fish, regardless of where you are in the strata.
That ought to tell you something about your analytical abilities as well (as might actually reading the links you post). But it won’t will it?
No matter, I think most people reading here understand who you are & in whose interest you write. :)
Mick Wikipedia ??
I said credible sources!
You haven’t had your nap have you?
So now it was John Maynard Keynes that was persecuted by McCarthy not MMT. You do make this up as you go along.
Do you have a source for Hayek’s endorsement of McCarthyism or did you make that up?
How about the proliferation of Keynesian Militarism?
“In general, it can probably be said that the conservative does not object to coercion or arbitrary power so long as it is used for what he regards as the right purposes. He believes that if government is in the hands of decent men, it ought not to be too much restricted by rigid rules. Since he is essentially opportunist and lacks principles, his main hope must be that the wise and the good will rule — not merely by example, as we all must wish, but by authority given to them and enforced by them. Like the socialist, he is less concerned with the problem of how the powers of government should be limited than with that of who wields them; and, like the socialist, he regards himself as entitled to force the value he holds on other people.”
Friedrich Hayek, The Constitution of Liberty (Why I am not a conservative), 1960
I have ehlers danlos syndrome.
After being told by doctors in Ireland in December i could not be treated here and all they could do was manage my pain with morphine my friends and family fundraised for me to see the specialist in London in January.
I was told my condition was critical and I needed to be admitted under specialist care in London ASAP.
Well that was two months ago, i have been fundraising to be admitted back in hospital in London, while I work through the red tape of the travel abroad scheme and vhi forms and my condition continues to deteriorate.
This is what eds patients are facing. No one who is Ill should have to face this. If we can not access specialist care in Ireland than we should be able to access the care in London.
Zondra I know what you are going through and it is a disgrace that you and others with the serious co morbid illness that go with EDS are left to try to fund their care abroad themselves. If doctors here can’t treat someone you should be able to seek treatment in an eu country where doctors can.
I bet if you were the son / daughter of a TD you’d get treatment fairly quick. The way people are treated by the HSE in this country is a disgrace.
@Zondra Meaney: Most of us in the UK can’t get referred to an EDS specialist either – I was diagnosed a few years ago after years of misery by a physiotherapist, and my GPs don’t want to know (they all look at me like a crazy person if I try to talk to them about it), and when I tried to get my daughter referred, they refused (as well as referring us to SS because of her bruising, which, as you know is one of the markers for EDS) – couldn’t get us out the door fast enough!
They’re happy to give me painkillers, and promise pain management that never materialises, but that’s about it – the rest I have to manage myself, which isn’t cheap, especially since the DWP declared me fully mobile and in no need of mobility support whatsoever – life is hard enough for those with very obvious diseases/disabilities, but it’s even harder when you have a condition that the system still pretends doesn’t exist!
I think the health service is unfixable in this country for a number of reasons but mainly the professional snobbery and unwillingness to share information between medical professionals or work together to help the patient. Advantage physio I see it every week where someone comes to me within chronic issue and it’s clearly being dismissed, or the patient wasn’t listened too and the information wasnt shared so diagnosis missed and these consultants don’t come cheap. Patient of mine with Fibromyalgia was ignored for years and in chronic pain, had just paid a consultant €170, 3 consecutive times with.no relief and just kept upping the meds to no avail. I did 3 sessions and she saw a massive improvement in her condition with reduction of pain by over 80% ( her words not mine)
Its not rocket science that I’m performing but basic myocardial techniques but I’ve given clients letters for gp’s and consultants but they’ve either been binned in front of my.patient when handed to doctor or completely ignored.
In Europe all health professionals work together for the treatment centred patient, Here it’s a constant struggle for patients to get the medical jigsaw to pull together.
Rant over!
Was not Enda not choking back the tears at a funeral this week? But he seems to be happy enough to leave these unfortunate people rot. It really does boil down to who you know in this country…
I know the first family and it is heartbreaking. That girl also has lupus and her bone marrow is affected the next serious infection could kill her. She urgently needs to go to the uk to try to stop her bone marrow being destroyed entirely. The Irish government is in breech of eu directive on cross border health care. It is as if it has been decided that the people with rare disease are dispensable cos there are no vote in it. Please next politician that comes to your door ask them about it. No one should die just because the government or VHI don’t want to pay
Is there any possible way a Lupus specialist in Ireland (if there is one) can refer her to London and she can get treatment for the EDS whilst she gets Lupus treatment?
The hse, vhi and govt should look at this on cost/benefit basis.
If as has been described in this article, the sufferers often end up with serious secondary ailments requiring hospitalisation, then each of these admissions for treatment of injuries or infections adds up in cost.
A one-off (is it one-off?) treatment should pay for itself in a year or two with sufferers not falling ill and in hospital or ending up on sick pay or disability allowance.
Rare conditions are not rare collectively in ireland!! I have ehlers danlos syndrome type three, meniers disease and autonomic dysfunction, recently I have been suffering with hypoglycaemia. … which in the last three months no dr had been able to tell me why. All iv been told is to eat more, iv been leftto manage each condition I suffer from by myself. When I pass out every couple of days, those around me are unsure is it blood pressure or blood sugars? If it’s blood sugars it is a medical emergency. .. I could die from it if left untreated.
I had to be diagnosed in england two years ago with eds as drs here told me I was suffering from a mental illness instead. It is a struggle every day, as you have to manage existing problems and also learn how to deal with emerging problems. Its sad to think that there is no help in this country for people with chronic conditions. We are just left by the way side…. and the health care system just treats up like rubbish and hopes we go away
This makes me angry- to think Irish citizens are suffering while medical services are provided free to asylum seekers and other immigrants.
2 examples;
1- there is a free medical clinic in Tallaght hospital *specifically for* Roma.
2- the cancer nurses in Tallaght tell of situations where Eastern Europeans will arrive in with their parent(s) who ‘happened to be on holiday’ and ‘got a pain’ and were diagnosed with cancer and so have to be treated here.
It is just wrong.
It is absolutely not wrong.
Very basic and cheap levels of care make massive impacts on common conditions.
Rare, complex conditions affecting tiny numbers of people can very easily become resource black holes by comparison, for relatively small improvements.
How many people would you like to see die from common, easily treatable conditions that we are already set up to look after in order to provide additional care to a tiny portion of people with rare disorders?
Oh so you do think people are dispensable. How do you know there will be little improvement. What she and her consultant here is looking for is guidance on treatment here from experts in uk. It will make huge improvements by telling docs here how to treat the condition here so she can have a productive life in her own country. Otherwise she will end up on long term disability and get another infection like meningitis that could kill her. But hell that’s ok with you cos her condition is rare
People are not dispensable.
We have finite resources – only so many nurses, so many doctors, so much money. Those resources have to be allocated in a way that does the money good, for the most people.
It is objectively better to use limited resources to keep many people alive and well than to use those resources to help a small group of people.
We have to do this every day – we constantly have to prioritize the patients we see and the treatments we can provide.
If you want more resources you will have to tell your government to hire more nurses and doctors. What tax increase would you like to see?
This is actual financially better value pay to get expert advice in uk that will reduce dependence and allow people a quality of life. Or keep providing ineffective treatment here that is more costly but useless and ensure the illness becomes more progressive and debilitating. In what world does this make sense. There is a eu directive in place on both rare diseases care pathways and in relation to cross border treatments if not available in country of origins. The Irish government is in contravention of them and taking a very short sighted few without actually looking at the benefit it is cheaper in the long term
Well I hope you never have to face watch a loved one suffer a rare condition. I am sure you will tell them ah sure it costs too much to treat you there are more common conditions that can be treated for more people so you can rot. Sure why bother to try to treat cancer cos a lot will die any way. Your sentiments are disgusting
You prefer to tell many people they should die from preventable, treatable conditions so that we can improve the care given to a few, but it’s me that’s the baddie?
How much do you want your taxes to go up by? How much do you want your local diabetic clinic cut by? How many COPD patients do you want to lose? That’s what it comes down to.
It is not what it comes down to. As I said people with rare diseases are still accessing health care In this country which is currently still costing money but it is ineffective therefore inefficient in terms of cost. let them access experts that can advise re future care management relatively cheaply and ensure effective use of resources. As it is the health service is wasting thousands on on rhuematologists etc who know nothing about the condition and people are being debilitated at a cost to revenue and social welfare etc. it makes no sense morally and financially
You clearly are a doctor or nurse. God protect us from doctors like you playing god.
Tell me, my 4yr old son has EDS, am I to just accept there is no treatment for him here and travel to and from England, spending €1,000 per visit? It is our human RIGHT to have treatment available, whether it be here or abroad, for free, or at least, at a much lower cost. As I said in the article, EDS may not be rare but rather, rarely diagnosed. Anyone who is “double jointed” has a good chance of having the condition, we all know people like this. I dislocated my wrist last week, simply by plaiting my hair! Is this something a child should have to endure? Do you know people have died from EDS complications? Some have even taken their own lives because they couldn’t access treatment and had to live in pain day in, day out. Your lack of empathy is very upsetting.
The OP of this comment thread wasn’t talking about common vs rare but moreso…why can’t this Irish citizen get care for her rarely diagnosed condition vs people coming in from other countries who do not live in Ireland conveniently to get free treatment.
Similar problem I have in my country…people who come illegally to get on our government healthcare program which strains the public program for people who are residents and citizens of our nation.
I have EDS. I say rarely diagnosed because there are a ton of people who have it that never know they do. My family has three diagnosed people…there were many more. Were. They died not knowing.
I know this girl and you seem quite mislead. This IS about rare versus common. The treatment she needs does not exist in Ireland so “illegal immigrants” can’t access it either and are even less likely to get it.
Sorry predictive text corrections for above rant.. Should say “As a physio” not advantage and “Myofascial” not.myocardial. Must remember to.proof read these rants in future :0)
Our health service doesn’t work properly
Well said Dave and Alan Lawlor.
both myself and my 13 year old daughter have eds. It is a horrible illness we are all citizins of this country regardless of our illness we all need to be treated equally regarding our health care thats all us eds people are looking for. it is our basic human right, and i will fight to the death to get the proper care for my daughter just like any parent with a child with an illness, its one thing having eds but seeing your baby go threw it is heartbreaking
I suffer from ehlers danlos syndrome. I have found out for my self that taking out “citric acid” prevalent in most processed foods and acidic foods from my diet have reduced the symptoms. My joints don’t ache anymore and all the flue like symptoms are reduced. I have also found eating a lot of beef regularly has given me more muscle tone and strengthened tissue & ligaments, I am now a fully functioning person capable of doing most activities day to day…I do not do overtly excessive activities as theycan exhaust me for days, but on the whole I am normal in my daily functioning with no pain. The other things that help are abstention from drinking cold milk altogether, cheese and like products. Occasionally I drink hot milk but not regular as it causes joint stiffness and lethargy symptoms. I recently added “liquid colloidal mineral” to my diet , by a US Company called NOW although others are available from Amazon as well. This has drastically improved by neuro function and my memory capacity. The doctors didn’t do any thing for me nor do they know much as far as I am concerned, to me they are just a bunch of narrow minded drug pushers. I really do hope people with EDS do what I do as it will definitely help you…I have done extensive research and cured my self as well as others in many illnesses & diseases neglected by main stream medicine practitioners . I specialise in natural therapies & natural medicine most of whicht may be in your kitchen cupboard…No Charge! An open mind is the 1st step to finding a cure…May you find your cure!
Austerity Kills but obviously not those who implement it. The best of care for the pigs that vote for overwhelming cuts to the health budget. The only condition they are worried about is the condition of their pensions and salaries. Keep entrusting the well being of the nation to them and we will all have mental health problems to deal with along with everything else .
This is also what Beatrice West said about same Doctor Uwadia Amenifo, i sometime talk about.
‘I am Beatrice West of 100 Adams Street, Texas, USA. I want to quickly enjoin all here to help me say a big thanks to
Doctor Uwadia Amenifo for his wonderful work he has done for my family for saving my son of his Hypermobility and
scoliosis. Brethren, my son by name is called Josh, and he is 18 years old. He was very ill when he was 8 years, and was
treated, we noticed that he begin to have issues with working when he was 10 years he always complain of his joints and
spine, and we took him to hospital for treatment, and the doctor diagnosed hypermobility, so he was given medications, and
we continued to give him his medications until when he was 15 he was also diagnosed of scoliosis in this, my son was
unable to Bend forward and backward, He was Walking with pain, he Doesn’t sleep well, Wake up middle of night to toilet
and During daytime he can’t stand to wee wee and need to rush him to toilet. This continues for two years and I was
running hectare scepter looking for how to get a cure for him. I was always doing a research online about his disease, and
I found in a blog where a woman aged 50 testified of how she was cured of Ehler-Danlos Syndrome by a herbal Doctor Uwadia Amenifo with the use of herbal medicine, and she didn’t have to undergo any surgery. So I found the info interesting and decided to be in contact with the said herbal doctor. In the blog were the contact details of the herbal doctor. So I pick up his contact and contacted him. After explaining what my son is going through he simply said to me that he is suffering from
scoliosis that was when I then told him that also he have hypermobility. So he counseled me, and promised me that he will
cure my son with his herbal medicine. So we concluded the arrangement, and he prepared the herbal medicine, and sent it to
me in Texas. So I gave it to my son just as he directed and to god be the glory my son was totally cured by his herbal
medicine of his hypermobility, and also hos scoliosis, and as I write this testimony, my son is totally cured and can now
move well and do all he was made to do. So please I want all here to help me say a big thanks to doctor Uwadia Amenifo for
his wonderful work in the life of my son. Today my son is totally cured. Please if you want to talk with doctor Uwadia
Amenifo concerning your health issues, and also if you are suffering from hypermobility, and or scoliosis and you want to
be cured without surgery just as my son was cured without surgery contact Dr Uwadia now on his email
(doctoruwadiaamenifo@gmail.com) or call him on (+2349052015874). God bless you all’.
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