Thank God I am not the lone one in the state! Right now Ryan's care
has been at Riley. While I find a certain measure of relief that they
are familiar with Stickler, I am surprised that there has not been a
group developed (given the implication that there are many that attend
there) at least for support in the area.

I hate having to re-educate primary care staff about my son. Yesterday
we spent time at the clinic because he was complaining of right leg
pain. Then I noticed yet again a familiar symptom of low platelets. I
have seen doctors become baffled and one ask if whether this was
related to his Stickler (in Hem/Onc). A good question but how many
with Stickler are having this problem? I am excited to learn my son is
not the only one.

I hate feeling like Ryan and I are out in the middle of an ocean
treading water waiting on a ship of people we know.

--- In sticklersyndrome@yahoogroups.com, "Heather" <mattnheatherr@...>
wrote:
>
> Hi Sarah! I to live in Indiana. I sure don't know of any support
> groups around here. I have 2 daughters with Stickler. I also have
it
> as well. My oldest is 12. She is 90% blind in her right eye due to
a
> retinal detachment. She has had a retinal detachment in both eyes.
> She has buckles on them both now. She also had a cleft-palate. She
> doesn't have anything else going on with the Sticklers right now. My
> second daughter has Pierre-Robin, cleft-palate, also has had retinal
> tears, which they have done laser surgery on. She also has osteo-
> arthritis. She is 10. If you need to start seeing specialist for
> your eyes I love Midwest Eye Institute in Indianapolis. I drive to
> Columbus Childrens Hospital for everything else.
>
> Heather
>