rory2-450x750

How Rescuing a Puppy Changed My Life With Ehlers-Danlos Syndrome

 

Dear Rory,

Out of the three humans who take are of you, I know I am not the best at it, nor am I your favorite — unless you consider ankle-biting to be the utmost sign of your affection, then yes, I am your most beloved human.

woman holding dog with cone on head

I know you are a dog and writing to you is silly, but I need to explain why.

After rescuing you in early December, my life changed dramatically. Not as drastic a change as chronic symptoms, but a change nonetheless. I was forced out of my fatigue-insomnia-pain ridden state I’d been slowly retreating into over the past couple of months. Due to work and stress all the while being in pain, I began losing energy, and losing it fast.

I couldn’t adjust automatically to your puppy schedule, but once I did, I was taking part in feeding you, cleaning up after you, and watching you constantly to make sure you didn’t pull out staples from the carpet stairs and get into all sorts of other mischief. I began staying awake longer, sleeping better, eating more, talking more, communicating better with doctors, even reading more, and slowly but surely, I found my way to a life that I could proud of. If I don’t accomplish much during my time, then I’ll contribute. I’ll never be able to go back to the way my life was before my Ehlers-Danlos syndrome got worse, but I will be able to move forward so much more than if I didn’t have you to keep me going.

 

So I understand that you are a dog, and writing to you is silly, but with my actions I hope I can say, “Thank you, Rory, for rescuing me.”

source;http://themighty.com

 

cannabis-ehlers-danlos-syndrome

People With Ehlers-Danlos Syndrome Explain What It Feels Like

(EDS) is a group of connective tissue gene disorders, and symptoms include skin that tears or bruises easily and unstable joints prone to frequent dislocations, among other issues.

Image result for ehlers danlos syndrome

EDS affects somewhere between 1 in 2,500 to 1 in 5,000 people in the United States, but understanding of the disorder tends to be limited among society and medical professionals. Some individuals with EDS remark that their doctors don’t even know how to spell it, and the most common analogy likens the body of someone with EDS to that of a house built with faulty materials.

“Our EDS community formed out of a need to understand ourselves even when medical professionals did not,” a spokesperson for the Ehlers-Danlos National Foundation told The Mighty. “Awareness about EDS leads to better lives. Although EDS is not curable, early diagnosis can limit long-term damage as problems can be treated as they arise, and sharing information in our communities about what has worked for each of us can help all of us.”

We teamed up with the Ehlers-Danlos National Foundation to ask their Facebook community how they would describe the disorder to someone who doesn’t have it.

Here’s what they had to say:

1. “It feels like I’m 80 when I’m 40.” —Kimberly A. Bates

A quote from Kimberly A. Bates that says, “It feels like I'm 80 when I'm 40."

2. “It feels like having the flu all the time.” —Linnie Lin

A quote from Linnie Lin that says, “It feels like having the flu all the time."

3. “I feel like an alien on a planet where I don’t belong.” —Yolanda Smith

4. “It feels like I’m slowly disintegrating into particles…” —Sarah-Marie Zeraphic-McFarlane

A quote from Sarah-Marie Zeraphic-McFarlane that says, “It feels like I'm slowly disintegrating into particles…”

5. “It feels like my body is falling apart at every joint.” —Breanna Griggs-Meloy

6. “It’s like a big pair of knickers with no elastic left.” —Christine Di Ciacca

A quote from Christine Di Ciacca that says, “It's like a big pair of knickers with no elastic left.”

7. “It’s like having the flu, a hangover and getting hit by a bus all at the same time.” —Irene Beck

8. “I feel like a marionette and someone else is in charge of the way I move.” —Nicole Hess

A quote from Nicole Hess that says, “I feel like a marionette and someone else is in charge of the way I move.”

9. “It feels like your body is trying to turn itself inside-out, piece by piece.” —Aria Eragon

10. “It feels like I’m made of rubber bands that are about to snap.” —Katie Thomson

A quote from Katie Thomson that says, “It feels like I'm made of rubber bands that are about to snap.”

11. “It feels like you’ve lifted a car off someone all day every day.”—Melissa Conder

source;http://themighty.com

img_2450

10 Things You May Not Know About My Ehlers-Danlos Syndrome

When the media features Ehlers-Danlos syndrome (EDS), the focus is usually on those of us who dislocate multiple times a day, the chronic pain, those who can contort their bodies into extreme positions, and sometimes extremely stretchy skin. EDS, a genetic connective tissue disorder, is very under-recognized, even by the medical community, as most doctors, when they have heard of EDS, are only familiar with the well-emphasized symptoms. The lack of emphasis on the other signs means that those of us who present more subtly may struggle immensely in finding answers. Some of us, like me, even know our diagnoses going into our appointments and yet still struggle to find a doctor willing to learn and listen long enough to provide us with the “official” medical confirmation. Don’t get me wrong, we all struggle. From the obvious to the subtle, to live with EDS is to suffer, but even a small amount of recognition and a slight increase in awareness of our disease could go a long way towards improving all our lives.

Image result for eds

EDS does have a very distinct clinical picture, but I don’t believe that’s the picture that’s well-known presently. The lack of awareness around EDS and its multi-systemic presentation needs to change.

The first time I complained of recurrent chest pain and pain in my arms and legs, I was 4. Doctors searched for the source of my chronic hip pain multiple times throughout my childhood, but they never found anything, and eventually they stopped trying. Eleven years ago, I began reporting chronic fatigue. I was provided a variety of seemingly disconnected diagnoses, but it never made sense to me that everything wasn’t all connected. Four years ago, frustrated with no doctor even making an attempt to help me, I started reading medical research myself. Having now found a lot of my answers, I’m still frustrated for every individual who has to go through similar experiences, including having to repeatedly face pervasive intolerances and a complete lack of understanding. 

I’ve learned a lot during my journey, but the fact that’s become most apparent to me is that nothing is going to change if no one talks about their experiences. So, in honor of all the zebras out there, here are 23 things people may not know about my invisible disabilities.

1. The chronic conditions and diagnoses I live with are: Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome /dysautonomiafibromyalgia, chronic fatigue syndrome, attention deficit disorder, asthma, cervicalgia, occipitoatlantal instability, loss of cervical lordosis, hyperhidrosis, orthostatic hypertension, hypertonic pelvic floor dysfunctionacrocyanosis, erythromelalgia, Raynaud’s syndrome, scoliosis, hypokyphosis (flattened thoracic spine), vertebral rotations, temporomandibular joint dysfunction, chronic intermittent paresthesiaschronic migraine, bilateral headaches and allergies. Every day’s a surprise symptom party…

2. The biggest adjustment I’ve had to make is: Knowing I can’t do everything.

3. Most people assume: Everything comes easy to me, and because I look fine, I am fine.

4. The hardest part about mornings are: Getting out of bed + showers. Heat and prolonged standing exacerbate and intensify my dysautonomia symptoms. Washing my hair even causes symptomatic problems, as holding my hands over my head reduces blood flow return to my heart, causing my heart to beat even faster, making what should be a simple act of showering into an exhausting and fatiguing experience, as my heart works overtime trying to pump blood to my body.

5. A gadget I couldn’t live without is: My computer (research is my superpower).

hand showing fingers due to raynaud's syndrome6. The hardest part about nights are: Knowing I’ll be having the *terrible morning, can’t get up, fatigue even worse than usual* feeling all over again.

7. Each day I take __ pills and vitamins: 11

8. Regarding alternative treatments: I am not opposed, but I want to do my own research.

9. Regarding working and career: I have too many interests for my own good. I want to do everything, yet – see #2.

10. People would be surprised to know: I’ve had never-ending fatigue every single day since 2005.

source;http://themighty.com

thinkstockphotos-590269964-640x213

Being Comfortable With the Uncomfortable

Invisible illness is a term those affected use to explain that while we may look “put together” on the outside, inside we are falling apart. In my case, I am literally falling apart. I have Ehlers-Danlos syndrome hypermobility type. I used to be able to go out in public and blend in with the crowds around me. No one could tell that my legs felt like lead from walking, or my swollen chest was making it hard to breathe. Until now. Now when I go out I am followed by a giant billboard that screams, “Hey look at me, I’m disabled!” That billboard is my service dog Rembrandt.

Woman training dog.

We have only been working together for five months, but already I have gotten used to the litany of questions and remarks I get from people while we are out. They usually are about his age, his breed (he’s a standard poodle), his height, what type of working dog he is, how cute he is, all of which are quick and easy to answer. Though lately I have been noticing a trend. An individual will see me working with him, asking for commands and rewarding with treats, and they will ask “Are you training him?”

I reply “No, he’s mine,” with a smile. Then it happens. Their face will change, eyes widen with shock and their expression softens to one of sympathy. That’s it. The conversation is over. The individual will then turn and walk away without any further questions or comments. I can understand a person not wanting to seem rude or intrusive (and I have no problem telling someone if they are) but is encountering a disabled person that uncomfortable?

Being comfortable with the uncomfortable is something that people who are chronically ill understand well. We often don’t like dealing with doctors, medications, and the gamut of problems our bodies serve us every day, but we deal with it. We are comfortable with ourselves; why shouldn’t others be as well? What is so jarring about meeting someone with a disability that some people feel the need to turn and walk away? I may never know the answer. Having been on the receiving end of the phasing-out period that occurs when friends no longer want to have a disabled friend, I may not want to know. Now that is uncomfortable.

I can advocate for the invisibly ill until I lose my voice, but there will continue to be those who remain uncomfortable with the disabled community. Until then, Rembrandt and I will continue to walk along, answering simple questions and waiting to find someone willing to push past the stigma and have a conversation.

source;http://themighty.com

img_2641-300x300

15 ESSENTIALS TO A SUCCESSFUL CAREER WHILE LIVING WITH A EHLERS DANLOS SYNDROME

15 essentials to a successful career while living with a chronic illness

When you go through a health crisis or even have to face going on disability (either through your employer or through social security), most of the time your life is turned upside down; focusing on your health is now all-consuming.  It is hard to imagine going back to work, even if you find some sort of stability, because your days are spent trying not to spiral down again.  This is what I call The EDS Spiral.  The EDS Spiral is my own term, based on my experiences of going through the ups and downs of living with numerous chronic health conditions and how this roller coaster ride affects my mental, physical and emotional health.  The same phenomenon has occurred with countless people, so much so that research on Ehlers-Danlos Syndrome is now regularly discussing it.

Still, how do you climb out of the spiral, find a way to go back to work, and have a successful career, if that is your goal?  Below, I have listed the top 13 things that I have found are essential to having a successful career while living with a chronic illness.

1. Taking care of my whole self first, no matter what – physically, mentally, emotionally and spiritually. For me, proper nutrition and exercise daily is crucial, and a way of life. It’s non-negotiable. Additionally, proper exercise and nutrition helps me meet the needs of taking care of the mental, emotional and spiritual aspects of my health. IMG_2564

2. Personal Growth – Personal growth is essential to me being the best person I can be (see number 10). By having a consistent willingness to think outside of the box and view things from a different perspective, I cultivate my own sense of optimism and possibility. Being my best self, affects my overall health and wellbeing, which also greatly impacts my symptoms and issues with EDS.

3. Learn to trust again – I tend to think that people have a genuine desire to be honest, trustworthy and will do unto you as you have done for them. However, I have found that sometimes those who you are closest to and do love you, can really hurt you.  It is very hard to trust anyone, when someone closest to you has hurt you deeply.  Finding a way to let go of the pain and trust again is therapeutic and healing.

4. Commitment – this has to do with reliability & accountability to those who are depending on you, including yourself.IMG_2641

5. Look from the outside in – I try to focus on being present in the moment.  I try to view myself from an outside perspective, especially with my kids, because even though our intentions may be good, and our actions and words seem justified, our mannerisms, the words we use, and our overall demeanor can give off a completely different feeling.  We all deal with our own internal chaos, especially those of us with chronic health issues or pain. By checking-in with how that may or may not be affecting others, we can ensure that our impact today matches our intentions in the long run.

6. Always telling the truth and not stretching the truth – honesty and integrity are crucial to building trusting relationships whether in business, friendship, marriage, or with family.  And why stretch the truth either, even just a little? Stretching the truth just a smidge, still damages trust in relationships.IMG_4882

7. Controlling my emotions & reactions amidst a tornado that is happening around me – Some of the best advice ever given to me was to learn to control my own reactions, despite the reactions of those around me.  No one makes you do anything or react a certain way.  Each one of us owns our own actions and reactions no matter what. It is easy with a chronic condition to try to excuse or justify behavior, but by being accountable, we become more reliable for others, and have greater control of our selves.

8. Not caring if people not like me or what I do – Haters are gonna hate and opinions are like b_tt holes (proper medical term – the anus), everyone’s got one.  Personally, I am more affected by the opinions of my family versus strangers. Unfortunately, there are some incredibly vindictive and malicious people in this world.  The more visibility you have, the more opportunity to cross paths with different people and you become more open to a whole lot of nonsense.

9. Facing fears and being willing to take calculated risks – fear can be paralyzing, but taking calculated risks is the only way to fulfill your aspirations.  I am far from a risk taker or thrill seeker by nature, but I have pushed myself to take small baby steps with things outside of my comfort zone.IMG_2504

10. Being ok with failure – I’ve learned to become quite comfortable with what many would consider failure.  Failures are learning experiences for me.  Most times, I have no idea what I’m supposed to learn from a failure or why life has put a certain challenge in my path, but changing my view on my failures has been freeing.IMG_4702

 

 

11. Learning to let go – Starts with being real with what is; for example, managing my OCD and accepting that I am very ADD, which means it’s hard to accept that I do not have control all the time.  Letting go of things outside of my control, or accepting what is humanly possible in a give day, is very challenging.

12. Have at least one mental dump each day – I need to regularly mentally dump the long-list of things I need and want to do.  Writing things down that are in my head at then end of the day, helps my productivity the next day.  I also benefit by doing something mindless, and quiet.  I need time to think, and covet my time alone.  Learn to be ok with taking time for self-care.

13. Learn my true priorities on a given day or at a specific moment – Know what matters first: for me it is my health. Many times I have chosen a workout over housekeeping, because working out is way more important to my overall health and well-being, and productivity in business. And as long as I workout, I have the strength and the stamina long-term to keep up with the housework and keeping things organized.

14. Focus on what I CAN do vs. what I CAN’T – This goes for anything in life, such as things I want to get done each day, as well as pertains to relationship struggles.  The cognitive effects from the whole shebang of issues that I deal with daily have proven pretty devastating.  However, I’ve had to learn to focus on very small, immediate steps to get anything done. It does not matter that I am just not as fast as I would like, or used to be.  There are countless times when I cannot immediately finish something I’ve started, because I just do not have the time.  For someone who likes to finish what I’ve started, THIS is so hard.  This is where focusing on what I can do each day versus what I cannot is imperative, as is number 20.IMG_4235

15. Find something that you like to do and is flexible (pun intended) – Sometimes a job is a means to an end and that is perfectly fine.  I think flexibility is key here and if you like what you do, huge bonus.  However, liking to work in general is great too, even if you do not like aspects of your job, but if it provides flexibility — priceless.

The idea of a physical spiral that also affects our mental and emotional health, all stemming from living with Ehlers-Danlos Syndrome and its comorbidities, can apply to any chronic health condition or disease. The only person who can really help each one of us climb out of the spiral, and go on to achieve our goals, is the person we face willingly in the mirror each day.

SOURCE;http://strengthflexibilityhealtheds.com/

secialty-treatment-options-01

‘Running on borrowed time’: Doctor’s arrest delays surgery for Erika Crawford-Ehlers-Danlos syndrome

A St. George woman who has been battling a rare and potentially fatal disease for four years has received another setback.

Erika Crawford was diagnosed with Ehlers-Danlos syndrome, which can cause the body’s connective tissues to degenerate, in 2012.

Image result for ehlers danlos syndrome SURGERY

Her parents say she now takes “high levels of hydromorphone” to deal with the pain.

She can’t go on much longer like this,” says her father, Darren Crawford.

“We’re just running on borrowed time right now.”

Crawford has undergone spinal surgery in Maryland, as her family was unable to find any doctors in Ontario who could perform the operation.

Her parents have spent more than $250,000 on treatment from the doctor in Maryland.

They have pushed the provincial government to allow that doctor to perform surgery on her in Ontario, but the province has resisted – choosing instead to train Dr. Mohammed Shamji of Mississauga to perform the operation.

Shamji has been working with the doctor in Maryland to learn more about Crawford’s condition, and was scheduled to operate on her Monday morning.

That changed on Friday, when the Crawfords received a phone call telling them the surgery was off – because Shamji was in police custody.

He is facing a charge of first-degree murder in connection with the death of his wife, Dr. Elana Fric-Shamji.

The body of Fric-Shamji, a physician, was found last week in a wooded area near Kleinburg, north of Toronto. Her cause of death has been determined to be a combination of strangulations and blunt force trauma to the head.

“We were just shocked,” said Darren Crawford, Erika’s father. “The news was pretty horrible to hear.”

Erika was especially distraught by the news. Her parents say she hasn’t left her room since the phone call came.

While the surgery would not have cured her of Ehlers-Danlos syndrome – there is no known cure – it would have given her a marked improvement in her quality of life.

The Crawfords have been told that another surgeon will be brought in to perform the surgery, but at this point they do not know who that surgeon is or when the surgery will be able to happen.

Crawford’s case also came up at Queen’s Park on Monday, with Progressive Conservative leader Patrick Brown citing it as an example of understaffing and underservicing in Ontario’s health care sector, and NDP leader Andrea Horwath calling on the province to “find any way possible to … ensure this young woman gets her surgery.”

source;http://kitchener.ctvnews.ca/

harry-1

Teacher forced to quit job after doctors say she can’t be around children-Ehlers-Danlos syndrome

Hannah Henry, 26, has been forced to give up her dream job after doctors said working in classrooms could put her life at risk

Hannah has Ehlers-Danlos syndrome, Postural Tachycardia Syndrome (PoTS) and mass cell activation disorder

ehlers-danlos-syndrome-4-638

Living with Ehlers-Danlos Syndrome: “Sometimes I just don’t have it in me to be inspirational”

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s bonus column comes from previous contributor Michael Bihovsky.

Image result for Ehlers-Danlos Syndrome

I have a connective tissue disorder named Ehlers-Danlos Syndrome. It’s a genetic collagen defect that results in super lax ligaments and tendons, creating frequent joint dislocations, cartilage tears, chronic muscle spasms, and much more. May is Ehlers-Danlos Awareness Month.

Every EDS patient knows that one of the hardest parts of our day is the moment we open our eyes and waken into the reality of our bodies

Usually I take this opportunity to say something inspiring, about how my illness has changed me for the better and given me a clear purpose in life for both the work I do and the person I want to be. While all these things are true, the fact is that sometimes I’m in a physical state where I just don’t have it in me to be inspirational. And that’s all right – inspirational words are meaningless without the context of genuine human struggle. So, if you’re interested – and if you’ll bear with me – I’d like to take this opportunity to talk about EDS in its rawest sense, and to do my part to tell you about the very serious disease it is.

When I was a child, I got sick… and I never got better. And I never will. When I was finally diagnosed with EDS, it was made clear to me that there was no cure for my condition. The best we could do was try to manage and slow the symptoms – symptoms that were pretty much guaranteed, in the long run, to get worse. I have done the best I can with this knowledge. I’ve tried to make the most of the life I’ve been given, and whenever possible to keep a smile on my face and hope in my heart. But it’s been very hard. Every EDS patient knows that one of the hardest parts of our day is the moment we open our eyes and waken into the reality of our bodies, stirred from dreams of ourselves as we used to be, and the futures we imagined we’d have.

EDS is considered a rare disease, but every year the suspected percentage of those afflicted rises dramatically. The disease is notoriously underdiagnosed because doctors themselves don’t usually know about it, and are only able to start diagnosing patients when a textbook case (such as myself) walks into their office and physically demonstrates what it is. The devastating irony is that EDS is actually one of the simplest diseases to diagnose – all you really need is a protractor, and an online guide to a system of criteria known as the Beighton Scale. Then take this to your doctor for confirmation. When I performed these tests on myself a few years ago and then went to my doctors asking “What do you know about Ehlers-Danlos Syndrome?”, the deer-in-the-headlights look was as unanimous as it was unnerving.

So for anyone out there suffering from chronic pain, or other strange symptoms, please look into this. Or if you have a friend in physical distress, please pass on this information. EDS is a scary and challenging diagnosis, but the consequences of not knowing are far greater than that of a correct diagnosis. EDS symptoms can range from the very mild to the extremely severe. One thing is certain, though: If I had received a diagnosis back when my symptoms were mild, I would be living a very different life now. Every single day, in my struggle to actualize the person I still can be, I cannot help but mourn the person I could have been.

To the many people out there reading this who have EDS, or any other chronic illness, “invisible” or not – thank you for being my brothers and sisters. Take care of yourselves, and take care of each other. And remember that healing others may very well be the clearest path to healing ourselves.

source;http://scopeblog.stanford.edu/

images

It Hurts To Watch Her,How Much Pain….EDS

Image result for ehlers danlos syndrome

Sixteen-year-old Caroline Smith knows the surgery might kill her and cost her dad every cent he has.

But those are risks the Oxford County teen will take in two weeks to escape a life where friends shun her, doctors dismiss her and Ontario health ministers have left her and others to suffer with a rare disorder that can cause bones to dislocate at the slightest touch.

“I can’t have (any) physical contact . . . I can’t risk my neck being injured in any way. If I pick up something wrong, I could dislocate my wrist or my thumb,” she said this week.

Smith, from Princeton, near Woodstock, has a condition that weakens connective tissue like ligaments that bind bones: Ehlers-Danlos syndrome affects one in 5,000, only some of whom suffer the worst symptoms.

The toll on the teen has been immense: horrendous pain, limbs that pop out of their sockets, bowels she can no longer control, blood pressure that drops so she passes out and a spine so fragile a small blow to the neck might leave her a paraplegic.

Last year alone, Smith went about 200 times to emergency rooms and doctors, but it’s her next appointment that’s critical and expensive: A Maryland surgeon and facility will charge $100,000 to fuse a bone to her neck Aug. 20 to support a spinal cord that no longer safely supports her head.

Smith’s father Bruce, who’s looked after her as a single parent the past three years, isn’t wealthy: He doesn’t own a home, and while he works in a scrap yard, he’s seeking help from friends and strangers because the Health Ministry hasn’t agreed to pay for surgery outside Ontario.

“It hurts to watch her, how much pain she’s in. . . . We came in to the emerg one day . . . with her crying, saying ‘I’m not crazy,’ and the doctor, calling a psychiatrist, saying she is. This is basically how she’s been treated the last three of four years,” Smith said.

She’s not alone in misery.

About 100 Ontarians have Ehlers-Danlos, with about 20 with symptoms so severe their lives are consumed seeking help from doctors who don’t know what to do, said Darren Crawford, whose 19-year-old daughter Erika has undergone two American surgeries at a cost of $185,000.

“(Some) neurosurgeons here have such big egos, they say, ‘If I don’t know about it, it doesn’t exist’, ” Crawford said.

For Caroline Smith, though, one doctor has been a godsend — London pediatrician Tony D’Souza, who started a practice here after forming and leading the pediatric emergency department at McMaster University Children’s Hospital.

In the face of several obstacles, D’Souza has been fighting for a teenager he calls determined and vibrant. Each time he sees her, she gets worse and worse.

“The neck issue is pressing,” he said. “Could she die? I don’t know.”

It was D’Souza who reached out on Smith’s behalf to surgeon Fraser Henderson, who’s done about 2,000 operations on those with Ehlers-Danlos, including on Erika Crawford, in a facility in suburban Washington, D.C.

Henderson responded in two weeks and said he’d re-arrange his busy schedule so he could see and treat her.

“He’s not doing this because he wants the business,” D’Souza said.

Not a single Ontario surgeon has stepped forward to say he or she could do the surgery, he said.

As for Bruce Smith, there’s no way he’d allow an Ontario surgeon to cut open his daughter without having extensive experience doing spinal surgery on patients with Ehlers-Danlos.

“(I’m not going) to trust someone from here (to) use her as a guinea pig,” Smith said.

Caroline Smith leaves for Maryland Aug. 18 and will have surgery two days later — Henderson required an initial payment of just $20,000 so the operation wouldn’t be delayed.

While there is speedy treatment south of the border, governing Liberals in Ontario won’t pay.

“These cases are heartbreaking,” then Ontario health minister Deb Matthews said in September 2012.

Three years later, the Health Ministry is still fighting the Crawfords from getting reimbursed for the $190,000 spent on Erika’s surgeries, and Matthews’ successor, Eric Hoskins, is dodging questions and calls for help.

Seventeen days ago, in the face of criticism from families and media, Hoskins issued a statement, writing his ministry had identified specialists who would decide the best course of care here or outside the province.

“I have asked my ministry officials to connect families to these physicians to ensure that patients are receiving the care they need.”

But more than two weeks later, no one from the ministry had contacted the Smiths or the Crawfords. When The Free Press pressed Hoskins to provide the list of specialists, he refused, writing in an e-mail that doctors’ names must be kept confidential.

Asked how many spinal surgeries had been done in Ontario on patients with Ehlers-Danlos, and what the complication and mortality rates had been, Hoskins ignored the question.

“We would encourage (patients) to contact the ministry for assistance at 613-536-3123 and ministry staff will connect them with a specialist who can determine the appropriate course of care for them,” Hoskins wrote.

But when the Smiths and Crawfords each phoned that number, bureaucrat Bev Lyman refused to disclose doctors’ names.

It was only after The Free Press pushed Hoskins for answers that Lyman sent by courier letters to families. Only referring doctors, and not families, will get a list of specialists, she wrote.

“It’s a run-around,” Erika’s mother Michelle Crawford said Thursday.

Many people have done much to help Caroline Smith, her father says.

But those efforts aren’t enough and Caroline Smith is left to imagine a health-care system in Ontario where patients like her would be helped with care and compassion.

“Children should never have to go through being (called) crazy,” she said. “They (shouldn’t) have to randomly become a millionaire to afford (treatment).”

source;http://www.lfpress.com/

Silhouette of man on a wheelchair

Amazing Safety Tips for Living with EDS

Living with Ehlers-Danlos syndrome (EDS) is a lifelong process that requires constant monitoring on how to remain active, yet also physically secure and safe.

EDS is a condition that leads to deformed connective tissue, the “glue” that holds the body together. Any sudden move or jolt, and your muscles and joints may come apart.

There is no cure for EDS, so living life with this condition means accepting a certain level of chronic pain.

I want to share some safety tips that I have learned that I hope will help others, like myself, who have EDS.

Car Safety

To prevent your sacrum from shifting out of place while getting into and out of a car, it is best to find a car seat where you do not have to either dip down or lift yourself up when getting into the seat. If you can just slide into the seat, you have the best chance of staying in position.

We ended up with a Prius recently and I realized I had to have the seat changed. Although the height was correct, I had to lift myself into the seat due to the design that sinks in from a lip on the side. We were able to find a person that could reconstruct the seat, making the entire surface flat.

To get into the car with the least chance of slipping out of position, I sit down on the seat, turn towards the front of the car and then I swing my legs into the car.

Check and see where your legs are when you sit down. It is best if they are at a ninety degree angle, not above your waist or below. The best way to judge may be to focus on your knees. If they are higher than your hips, you are probably in trouble.

Reaching

If you are sitting in a chair and something drops to either side, for many of us with EDS, the most damaging thing we can do is lean over to the side and reach down to pick it up.

That will cause what is called an “up-slip,” where the femur jams up into your hip. It does not hurt at first, but tends to show up the next day and is very uncomfortable. To check if you have created this problem, lie on a bed, arch up and then gently put your legs down. Have someone check to see if your ankle bones meet. If there is an upslip, there will be a difference in the leg lengths. Get it corrected as soon as you can before it creates significant pain.

Opening Cans

Using downward pressure while attempting to open a can with a can opener can cause you to potentially sub lux your hand, fingers, elbow and/or shoulder. A simple fix to this is to purchase a product called the Handy Can-Opener. All you do is set it on the top on the can, press a button and let it do the magic of opening the can for you!

Sleeping Safely with POTS

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia, a condition that causes light-headedness, fainting, unstable blood pressure, abnormal heart rates, and sometimes even death.  I learned I had it in my 60’s.

I was instructed to sleep at a 30 degree angle by raising the entire frame of the bed at the head. At home, this is a simple process to do by putting boards under the frame. But what about traveling and staying in hotels?

We found out from a physical therapist that there are bed raisers sold that college students use to raise their dorms beds up to be able to store items underneath. We purchased four plastic bed raisers and found that if we use two on each of the head corners, we are able to raise hotel beds up for me to simulate some of the height we have at home.

It is not as high as my bed, but certainly better than sleeping flat with POTS. You might want to check with the hotel or motel to ensure access to a bed which can be adjusted in this manner.

Greeting Friends and Family

If you are like me, when others see you, they assume you are fine and don’t understand that a simple hug can cause subluxations. Many times, when my husband is with me, he will warn others to not touch me.

The hardest thing is when I am by myself and someone throws me off and suddenly is greeting me with a hug. I almost wish I could wear a sign that says, “Do Not Touch.”

Try to stay vigilant and ward off the damage that comes when someone who means well greets you, only end up hurting you my mistake.

Twisting

I was taught in physical therapy that when you twist, you must move from the hips. I made the mistake of twisting just from the waist and proceeded to sublux my back out. With EDS, when you throw something out of place, it can take weeks for it to settle down and hold properly again.

When sitting, It is also important to not cross your legs, for this can throw your sacrum out of place.

Shoes

If you have flat feet, getting good arch support is a must. Also, if you are having problems with your legs and/or feet subluxing, then wearing sneakers with the arch support inside them is the best bet. Also find sandals that have a good arch when you are not able to wear sneakers.

Trachea and Neck Stability

I have spent many years dealing with a trachea and sternum that shifts out of place. Despite sleeping with a bi-pap breathing machine,I have had many episodes in which my breathing was cut off. My lifeline at night for many years has been my service dog alerting me when the air flow has decreased or cut off.

I am now a proud owner of a new pillow another EDSer discovered that is holding the neck and head in the correct position and not allowing the trachea to collapse. I would encourage you to give it a try. It is called Therapeutica sleeping pillow and mine came from Core Products International.

Be sure to get the correct size. I had to exchange mine down to a child’s size to correctly stabilize the head.

Carrying Objects

For most of us, as we progress with EDS, holding items in our arms is painful and can cause more issues. While I was still teaching, I finally resorted to buying a luggage with wheels, like you see in the airport.

I don’t know why I hadn’t thought of that sooner. I used to carry 125 students essays and my books up to the second floor of a large school. I would ache for days after doing it. But once I switched to pulling the bag, life had a positive change. Today, I pull my swim items into the pool and can be more self-sufficient this way.

I hope these tips will be of help and hope you will comment and leave tips you have discovered. We need to help educate each other for a safer and less painful life.

source;http://www.painnewsnetwork.org/