Hi Sandi,
As a woman with EDS and as a mom of a 13 year old boy, I think I
understand how you feel and your confusion. I worry about you and your
boy. Doctors are taught in med school that if you hear hoofbeats, it's
a horse. Well, when you have EDS, you are like a zebra and nobody
seems to see what is so obvious to you. They see the patterns or they
don't, but they don't always consider that you are a zebra and not a
horse. Unfortunatelly, some doctors do not even recognize the sounds
of hoofbeats, either.
The groups of symptoms of EDS are organized into classes/types at
this point because it is an easy way to express what your symptoms are
exactly and in very few words. When you can say, "I have type 1 EDS",
a doctor will understand what your symptoms are and how it might
progress. That's a best case scenereo but not very typical.
But, Ehelers Danlos IS Ehlers Danlos-no matter what type you
might have. It is a connective tissue disorder and lots of things can
happen no matter which connctive tissue disorder you have.
In the future, as research is done, it might be helpful to know
what type you are because a certain genetic mutation may be occuring
and scientists can target your exact mutation at the root of the
problem. But at that point you will know your type because you would
probably be tested yourself.
Mutations might produce a type that is rare or shows cross
symptoms. Or few symptoms. That can make it difficult to type without
genetic testing.
Most typs of EDS are progressive so you might not show all of the
signs until much later in life. This is not something that all doctors
consider and why many children go undiagnosed.
My diagnosis is "corrected" by every doctor that I see so I just
follow the EDS Foundation's recmndations which are good no matter what
type I might have.
EDS varies so much but some people do fit into 1 catagory while
others do not.
Usually a cardiologist has knowledge of EDS and if you find a
good one, he/she might be able to answer your questions.
Write your questions down and don't forget the list when you go
for the appointment. I have found that most doctors will answer an
e-mail if you want clairaforcation about something. Their e-mail is
usually on their business card. This is great for busy moms and for
busy doctors,too. If you don't get the answers that make sense, then
you are not really getting answers and you might want to ask someone else.
I try to look at it like quantum physics (maybe that's why it's
so confusing, lol.) When you get right down to it, at the genetic
level, like quantum mechanics, you may never know all of the answers
but you can see the results and you can expect certain things to
happen even if you don't know why or how.
Now I feel more prepared and secure because I focus on non
invasive treatments that work and that reduce pain without narcotics.
Life is less stressfull for me when I spend my precous time and energy
getting what I expect.
Botton line, take all of the neccessary precautions and if you
want answers, you should keep asking.
Good Luck
-R
--- In ehlersdanlossupportclub@yahoogroups.com, "mlslng99"
<MLSLNG99@a...> wrote:
>
> Hello Everyone
>
> I recently joined this group and have been mostly lurking. My name
> is Sandi. I am a 43 y/o woman who was diagnosed with EDS type I
> according to my Rheumatologist. I am double jointed and can touch my
> nose with my tongue. I have never had a dislocation as far as I
> know. My Grandmother had skin fragility and severe pain starting in
> her 30's. I have been having pain everwhere
> (hips,knees,wrists,shoulders,back and neck.) Which was what brought
> me to the DR.s in the first place. Once I started researching I
> realized I have had some VEDS events-uterine rupture andlung blebs.
> I know I have read that it is possible to have crossover symptoms but
> when I went to a genetisist she didn't think I have type I at all.
> I am completely confused now and am concerned for my three children.
> My 13 y/o seems to be very flexble and has been complaining alot
> about pain in his knees and chest.
>
> Sorry this letter is so long. I would appreciate if someone can just
> point me in the right direction. Thank you very much and again sorry
> about the wordy letter.
>
> Sandi
>