Gosh Helen...............

Sounds like you have your hands full & one delightful little boy. I
admire your spirit.

If you can get to Baltimore Maryand, the are 2 awesome doctors
there. Dr. Clare Francomano who used to be involved in a great
study at NIH and is now in private practice. She is an awesome
physician & one of the nicest people you will ever meet. But since
she's in private practice, just like most all Doc's you'll likely
need insurance coverage.

You can still see her former partener, Dr. Nazli McDonnell who is
still at NIH and is still working on the study. I couldn't possibly
decide who is a better all around physician or a nicer person. They
are both wonderful. I know she's also planning on continuing & also
has a program specifically for children. The good thing about the
study at NIH is that you don't pay for the medcal testing because
it's a study. I would surely contact them to see what kind of a
wait you would have. I can assure you, whatever it is, it's worth
it!

You can also contact a local large university hospital near where
you live if you cannot make it to Baltimore. I would just check
ahead and be sure you see the head of the genetics department, but
ask if they are well versed in Connective Tissue Disorders,
especially Ehlers Danlos Syndrome. Come right out and ask them
exactly how many EDS patients they've seen and anything else that
concerns you. Don't be shy, but I've a feeling you're not!

Also, Dr. Mc Donnell will be a lead speaker at this years Ehlers
Danlos National Foundation's conference & will release the results
of the near 3 year long study, along with more then 15 other
incredible speakers. There will even be consult rooms and times for
individuals to speak with and ask questions of the doctors/health
professional, as well as a childrens room & special programs for
teens. It will be held in Houston Texas.

It's an amazing chance to see & speak with so many professionals in
one place. It will be July 20-22. Please see www.ednf.org for more
information about the conference and all that will be available
there & please know that the list is not yet complete.

Please keep us informed & if I can be of any further assistance to
you, please feel free to contact me.

Best Regards, Lisa Schoenberg

Lisa C. Schoenberg, RN
Ehlers Danlos National Foundation
International Projects Coordinator
President/Founder North Central N.J. Chapter
www.ednf.org
lisa.cherry2sky@...

KNOWLEDGE IS POWER!!



--- In ehlersdanlossupportclub@yahoogroups.com, "hburger64"
<hburger64@...> wrote:
>
> Hi everyone,
>
> I am writing about my 8yr old son, 3 years ago he was dx with
> Systemic onset juvenile rheumatiod arthritis and is on a lot of
> medications for this condition including a hospital visit every 4
> weeks for IV medications.
>
> Last fall his rheumatologist sent us to a geneisist as she felt he
> could also have something else going on. She examined him and
didnt
> feel he totally fit the dx critera for EDS or marfans. He has
> hypermobility in some joints, fragile skin which splits cigarette
> paper scars on his knees, easy brusing. I have also recently
noticed
> his gum is way down below one of his new front bottom teeth. She
> told us that he some signs of a connective tissue disorder but
that
> was it. To be on the safe side she sent us for an echocradigram
but
> she said it would most likely be normal.
>
> To cut a long story a little shorter we found out in the spring
that
> his echo showed he had a aortic root dilation at the sinues of
> valsalva. We were told to repeat the ehco in a year to see if
theres
> any further dialation.
>
> I have been trying to research connective tissue disorders,EDS and
> Marfans and see if a person can have Junvenile rheumatoid
arthritis
> as well as something like EDS, is it another issue totally.
>
> Any words of wisdom anyone can give would help me a lot. I hate
> being in a grey area. I like the facts and the i can deal with
> things and move on. Not knowing exactly whats going on is driving
me
> nuts.
>
> Thanks
> Helen
>