letter to the editor re missing info from my article

[Guest guest]

Attached is a letter to the editor; who knows if it will get published?

Some very important info was left out of the article and I wanted a shot

at having it included. The reporter said she couldn't give any more

space to it so I decuided I would try this. here's the letter:

This may be an unusual approach but some very key information was left

or edited out of the story about me, EDS and the cracks I continually

fall through in the health care system. I appreciate space is limited

but what was left out really is very important information and I would

like to see it presented. I hope you will print this letter to the

Editor as it speaks to a lot of the current problems with health care in

Nova Scotia, which are felt more by someone like me.

The story is about falling through cracks in the medical system when one

has a rare condition, yet a few of the most important cracks were not

presented in the article although I provided that information.

Importantly, a website and phone number for the Canadian Ehlers-Danlos

Association were not included (www.ceda.ca) and

respectively.

COncerning me and my EDS, the EDS affects every part of my body causing

a multitude of effects including chronic pain treated with daily

narcotics caused by hundreds of joint dislocations and subluxations per

day. My body is slowly and surely falling apart, piece by piece. People

(including physicians) are not always aware of it's possible widespread

effects or that it can be fatal from organ or artery rupture which can

happen without warning. All these problems are from defective, weak

tissue.

Specifically, since I have multiple prolems I get stuck on multiple

waitlists sometimes for as long as a year, often going to a long

awaited, much hoped for appointment to find a physician who is

disinterested, knows little or nothing about EDS, and I get stuck on

another waitlist to try again. I wait, wait, wait while I get worse,

worse, worse. I wish someone would send me out of province where there

are experts (like s Hopkins). The specialist merry go round has been

going round for three years now. Granted, some physicians involved truly

try their best but it isn't the same as having someone experienced in

EDS. Few physicians have time to read articles on my condition which in

my opinion hinders their ability to identify EDS related problems and

treat me. Physicians do not get reimbursed for time spent reading and

researching a patient's condition as in my case. I have occasionally had

comments made to me, mainly in the Emergency Department, which are

completely inappropriate and I feel would not be made if they had the

time and interest in learning more about this disorder and had seen

others with EDS. The reality is the limited time a physician has to read

up on this sort of things is spent on conditions they are apt to

encounter more frequently. Another crack I fall through. EDS is rare,

underdiagnosed and often misunderstood. All these problems are

emotionally draining; having to deal with the daily effects of the EDS

is draining enough.

I worry how any further cuts to health care will affect someone like me.

Excessive waits to see specialists is one symptom of a system wide

problem. People suffer needlessly and their conditions deteriorate while

they are waiting. It is not simply an inconvenience. With many ER visits

to reduce the few dislocations I cannot reduce myself I have spent as

long as 10 hours waiting although the usual is three to five hours. Who

among us would want to sit in pain from an unstable lower back and a

shoulder stuck over under my collarbone where it doesn't belong because

hospital Emergency services are overtaxed? Another crack, another

symptom of too much pressure on our health care system so it cannot

provide service in a reasonable period of time.

Many expenses are not covered and there is not enough funding or

insurance money available to pay for things someone with a worsening

disorder affecting every aspect of her daily life would need. There is

no meaningful reimbursement for gas and other expenses for my

approximately 150 trips to the city for specialist and other care. As

well, there are many things that could be done to my home to make things

easier but there is little government funding available and although my

income is good, my $10000+ annual medical expenses above what the

insurance and MSI covers takes care of any disposable income I might

have. In fact I have fallen $30,000 in debt since my health problems

began a few years ago. One province pays for all the braces and splints

one person with EDS needs. Not here. I have overrun that insurance

coverage the last two years and they do not cover all the splints and

braces I need. If I had everything I needed I might not be racking up so

many ER visits from falls to have dislocated joints put back in. When I

waited 7 months for my jaw surgery because my jaw was constantly

dislocating, I had a good 30 ER visits, most with xrays and with IV

sedation to put my jaw back. I figure these costs likely paid for the

jaw surgery and admission once or twice over. I should have had that

surgery right away, not seven months later.

I really feel unusual cases like mine need to be dealt with by the

Department of Health on an individual basis because our needs and

service use patterns are different than the average person. By not

providing certain items or services, it not only makes things worse for

me but in the long run, but costs the Department of Health more. I would

also like to see some sort of database on rare disorders (MSI could

determine this through billing information and hospital discharge/visit

information) and survey specialists who in turn would give an indication

of their knowledge level and secondarily their interest level would be

in treating patients with all rare conditions in the database. If

physicians here could access this information, referrals could be made

to the most appropriate specialist, not this hit and miss experience of

waiting almost a year, finding the specialist unhelpful or disinterested

then going back on another waitlist to see someone else in the same

specilialty. These wasted visits waste MSI's money. Why not have a high

tech, rational approach to helping people with rare conditions find the

right specialists. It could be clear earlier on that a person needs to

be send out of province rather than someone spending three years and MSI

money to find this out. This is not a problem with just EDS, others with

rare disorders go through some or all of the same problems. Something

needs to be said and done. In the province's eyes, it is as though

people like me are " invisible " .