Re: Sis-another reply re I was denied life ins. because of EDS

[Guest guest]

-FYI - My greatgrandmother was at least in her 70s, my

grandmother was a month shy of 88, my mom is currently 73 and going

strong. My mom almost did die when she was pregnant with my younger

sister - the nurses didn't check her as carefully as they did with

her previous two pregnancies despite her history of post partum

bleeding - she remembers being rushed into the Operating Room and

hearing the words " I don't think we're going to save this one "

Fortunately they gave her 2 or 3 pints of blood and she has been just

fine ever since - well, fine apart from peridontal problems, joint

problems, etc, all the non-life threatening things. Anyway, my

family history concures with yours - we tend to live a relatively

long life.

Very frustrating for you and all of us! As I said in and earlier

post, there must be something that can be done as a group.

-- In ceda , " ~Lonestar Rose~ "

wrote:

> Ms. Wolf didn't know any specifics other than I was denied due to

> Ehlers-Danlos Syndrome. Period. I have had the skin biopsy, and

further

> had it re-evaluated by Dr. Byers' lab. Negative for Vascular. I

have had

> 14 surgeries and not only survived, but healed in time. Slow

healing, yes,

> but I did heal. I am not pregnant, nor can I ever be again. I had

a

> hysterectomy and removal of ovaries on 2/14/1993. I had two

pregnancies

> resulting in two live births. No miscarriages. No abortions. I

have

> neither chronic bronchitis nor repeated bouts of pneumonia. I have

mild

> asthma and some environmental allergies, but of all my medical

conditions,

> that is probably the best and most successfully controlled. I do

not smoke,

> though I did many years ago. It has been 15-20 years since I

smoked, and I

> was never at any time a heavy smoker. Who is Christi? I am not

aware of

> any medically published research which indicates Classical EDS to

be fatal.

> Am I underinformed? I have been screened to a fair-thee-well. By

experts.

> Including the NIH under the direction of a connective tissue

disorder study

> by Dr. Clair Francomano. The standing of the NIH is beyond

reproach in the

> medical field. I have traveled this land in search of the highest

qualified

> medical specialists for each and every medical condition which has

> manifested itself secondary to EDS in my body and my children's. I

am

> handicapped, not terminally ill. Far from death. I receive the

best in

> medical care this country has to offer. If I thought any other

country on

> this globe offered further or better medical expertise, I possess a

valid

> passport and would not hesitate to go there. I shall ask Dr.

Byers' lab to

> further examine my biopsy in light of this information, but I do

not expect

> any different information than I already possess and honestly gave

to this

> life ins. co. If I need further genetic examination, I will seek

it

> wherever I find it any place on this planet. Further, I will have

the same

> done for my sons. I have already spoken to Dr. Francomano about

the

> possibilities of donating tissues/blood/etc. for medical research

purposes

> post mortem (many years from now!), and she promised to seriously

look into

> avenues for me to do that. My husband does not object as long as

he has

> remains to bury which would not prevent an open casket viewing...in

the

> event that he survives me. I am 43. People in my family from whom

I most

> certainly inherited EDS lived long lives. They became disabled and

> physically uncomfortable, but died OLD. By old, I mean 80-90 yrs.

old +.

> There is but one exception, and that was my maternal gg

grandmother, who

> developed cervical cancer which spread to her other organs. That

was in

> 1937, and the only treatment available at that time was

radium.....crude,

> painful, and unsuccessful. Also, pelvic exams, pap smears, etc.

were not

> commonly done nor available. I must add that Grandma Denning did

survive 10

> yrs. after the initial diagnosis and did receive radium treatments

in

> multiple treatments. I know this because my maternal grandmother

(another

> EDSer) attended Grandma Denning during her illness and was at her

bedside at

> her death. Even so, Grandma Denning was 77 at the time of her

death. Her

> daughter, my maternal g-grandmother was 98 at her death. Her

daughter, my

> maternal g-mother would have been 84 had she lived several more

hours. My

> mother is still living at age 63. I am 43.

>

>

>

>

> Re: [edsers] I was denied life ins. because of EDS

>

> If you like the company, you might want to work with them on this.

> Since they have this rule, there is a good chance it's coming from a

> place that will affect other underwriters as well.

>

> Besides the excellent suggestions offered by others, Ms. Wolf

> might be able to provide you with specifics, or perhaps a source for

> her information that explains the decision. The decision likely has

> to do with your " Classical EDS " diagnosis. I spent only a little

while

> cruising the internet and have already found several potentially

> fatal problems that could frighten away insurance companies.

>

> There are many kinds of collagen. Some people with Classical

> have a defect in their type V collagen, and these people can have

> chronic bronchitis or frequent bouts with pneumonia. That in itself

> can shorten life expectancy, I've heard. But if they smoke, their

> chances of developing life-threatening conditions of the lungs is

> much, much greater than that of " normal " people.

>

> Secondly, pregnancy has been known to be fatal in people with

> Classical EDS.

>

> Higher death rates from surgery, especially lung, colon, and heart

> surgery (because of fragile tissues) might be a problem as well.

>

> At any rate, once you find out what problems have led your

> insurance company to make the decision they have about Classical

> EDS, you can go through testing to exclude those conditions, get a

> statement from your doctor, and son on--showing that you are a

> good insurance risk.

>

> Another possibility is that they have learned that some people have

> a number of types of EDS (as do you). In that case, have you had

> medical screening that excludes the truly dangerous types? That

> might help them.

>

> Finally, the company may be on to the fact that there are many,

> many subtypes--some only just now being discovered, still

> unnamed, and poorly understood--of EDS, and that some of them

> can lead to aortic dissection, aortic root dilation, multiple

> aneurysms, or problems with the coronary arteries (leading to heart

> attacks). In this case, a thorough cardiac workup might help win

> you the insurance.

>

> These are all just guesses, of course. You'll only be able to learn

> the real problem with insuring you if Ms. Wolf can help you figure

> out what their reservations are.

>

> Best of luck,

> Cristi

>

>

>

>

> Lana Christensen, Secretary

> Girls and Boys Town

> Boys Town Press

> Ph:

> Fax:

> Email: christensenl@g...