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

[Guest guest]

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@...

[Guest guest]

,

Have you considered pursuing term life insurance instead? Term usually does

not deny for health issues, although the premiums may be higher and you may

run the risk of not being able to renew later.

Term life insurance is temporary insurance, which covers a person against

death for a limited amount of time (the amount of time covered is called the

" term " ). A term might be until children are grown, or until a couple

retires. Most policies have a set term in years (e.g. 10 or 20) and may be

renewable for a second or third term, up to a certain age.

Premiums are guaranteed for the length of the term

Premiums are paid until the term ends, at which time the policy may be

renewable. No benefits are received at the end of the term, regardless of

whether or not any claims were made.

Jill

[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...