Hello everyone I will just get straight to the point why I need advice!
My daughters Genetics doctor Dr. Marvin Miller from Dayton, ohio called and asked if I would be willing to come and talk to his med students. Dr. Miller is also a professor of pediatrics at Wright State University School of Medicine.

Has anyone ever done this, I am so nervous!!
We go next Tues. Nov. 24
I am exicited to do this but like I said nervous. I could not pass it up.

A big reason that want to do this is because I have had a few doctors say that they learned a bit about EDS in med school but was told that most likely they would never meet someone with EDS and with Chloe having Type 4 is more rare for them. Chloe will be going with me. She will not be able to understand any of it being 8 years old. But I want to show them that this is real and so is she. I also want to show them from looking at her you would think a normal kid until you get a closer look and know what to look for.
When I first met Dr. Miller we only thought that she could have EDS and he told me that he thought she did not have it because by looking at her. She can't bend fingers backwards and she can't bend every way. He wanted to test her anyways because of her fathers death was causes of EDS IV.

Ok sorry this post turned out longer than I planed but I welcome any advice!
Thanks
Jessie
I will be copying and pasting to another board sorry if you come across more than once

Wow - Excellent opportunity!
I don't have eds - but have become aware of it thru these boards.
From a perspective of someone who wasn't aware of it - this is what I'd advise.

Be cool - you know more about it than these guys!
Talk about the difficulty of diagnosis - and what would make it easier.
Talk about the pain issues - and 'drug seeker' stigmas that are put on eds'ers.
talk about the fact that no one knows what to do with these guys and that the doc can't give up, but that they need to support and continue to work with the patient.
Talk about your experiences - with doctors, hospitals, and your loved one. Good or bad.

I'm sure others will be here to offer other suggestions - but woot, what an opportunity!

linda

I do plan on being blunt with the students like instead of saying passed away saying died and so on. I also thought about talking when I met Dr. Miller (their teacher) how he told me that he did not think that Chloe had EDS because of the things that she couldn't do or her medical history. And it was only because of her fathers death and to "ease" my mind to know for sure. I will also point out that Dr. Miller was the nicest man I had ever met and seemed very caring man. The whole point is see have them that even their teacher was mislead in his learning and there is always a need to learn more no matter if you are dealing with EDS or any illness. Or I hope to get some kind of chance to say what I want to say!

Oh how cool! Talking about the fact that sometimes a condition might be a rare one, that they ought to keep that in the back of their minds. That just looking at the skin & flexibility of a patient might add 5 minutes to the appt, but could change someones life. When the persons symptoms & the machines findings don't match doesn't always mean the person is a faker.

I'm with the others...

Talk about the difficulties you have come across etc...

Also you might want to talk about other peoples difficulties that you have read/ heard about on boards...

Tell these doctors to be that if you think it might be even a 1% chance that there patient could have something like EDS then test for it,to rule it in or out as these things can manifest in more than just the textbook way, and maybe how many sufferers have gone through many years of stigma etc before there diagnosis, with being told it is all in there heads, that they are drug seeking (a VERY common one for anyone with an Invisible illness etc), that they are malingering, that they are making out things are worse than they are, that they have overbearing or overprotective parents, that there family situation is causing issues, that it is psychosomatic, that they have a somatoform disorder etc etc etc...

Maybe tell them that with a textbook definition of a disease a sufferer of that condition may not have EVERY symptom listed int he textbook etc but can still have the disorder (like your daughter who has V-EDS but not the increased flexibility that the Doc looked for)...

Good Luck and just talk to them, answer any questions they ask as you have experienced things or tell them about experiences that others you know of have been through...

This is a TRULY WONDERFUL opportunity to give these doctors to be a real case of what V-EDS is like and what living with it is like for your daughter and the rest of the family, what it is like getting a diagnosis and dealing with all of the medical and other stuff you have to due to this (like what if anything her school had to know or set in place for your daughter etc etc)...

Don't worry about it you will do fine...

You know a LOT more about V-EDS and EDS than these med students as it is part of your family and life due to your husband and child having it...

AGAIN GOOD LUCK AND ENJOY IT...

How'd it go?

Hello everyone
Everything went fine! Thank God!
The doctor started off by talk about all types of EDS and went on to talk about my family. After about 15 mins of him talking I had to sit in front of around 80 students and tell about our story.
I had told them that is is not as rare as you think. I went on to tell them about all of you. I had said I have talked to guessing around 100 or so people with some type of EDS. The doctor stopped me and said that many. I told him their are more than everyone thinks and they each have there own story but the stories are a lot a like, when it comes to pain, what EDS people look like and the deaths that they have had in there families. I had also talked about the show medical mysteries and the man that had EDS and could pull his skin and bend every way and it was called a freak show. I told them that yes there are EDS people that can do this and some that can not. My daughter cannot, I reminded them that even though it looks freaky they are not freaks. I went on to talk about how some caregivers of children suspected of child abuse. And that lead me to Cathy's story about David. I may have not gotten the whole story right and left out a lot but the students got the idea. What I said about Cathy's son was her son was 13 and he had became constipated and the mother did as any other mom would do she gave him a fleet suppository in hopes that he would be able to go. I ended it by saying that the doctor that David was seeing told the mother and father that the damage was so bad that it looked as if they stuck a rod up his rectal children services were brought in. After I was done talking their was one student in tears and others just shacking their heads. I ended the whole talk by telling just because you can't see it doesn't mean it isn't there. And I told them Chloe is a normal looking child but if you look closer you will see the veins the eyes and the skin being doughy. And if a doctor would have took the time to look at her and learn about her medical life it would smacked them if the face that something was not right

I had a thought that I will post in another posting labled A Thought I will do this later tonight
Thanks to all of you that gave me advice it was very helpful

Glad it went well.

A lot of us are concentrated here becasue if you search EDS this site comes up very early in the search.

I don't know anyone else with EDS...maybe two? who are suspected of having it but are NOWHERE near my level of disability (they're more like my sister's functioning level) so their docs didn't bother diagnosing them.

The med student in tears...my ortho cried when I told him I had EDS.

Their are people out there with EDS. I have found a lot of them on http://www.ehlers-danlos.org/forum/ and also myspace message groups. I know if you would go to to myspace page. Alone you would find 16 people with some type of EDS. http://profile.myspace.com/index.cfm?fu ... =191884960
I also went to home make over show message to somehow contact the mom with EDS. I never did hear from the mom from the show but I had 4 people email me and say that they too had EDS. Their is a yahoo group for EDS.

I take Chloe to see a EDS doctor in Cinn Ohio and I had asked him how many people do you see with EDS. And he told me around 700 that his office sees. and I also asked how many of them have type 4 his replie was 7 that he sees.

4 years ago when I first started learning about EDS I felt alone I could not find anyone. And now thier are so many stories just like mine