South Jersey Philly Group

We made a try in the past for a Philly South Jersey group. Since then I have met a zebra in the same SJC town through FB and another woman one town over. I have done a lot of research and there is little available in the Phillly area doctor wise.Does anyone want to make another try for a support group?

Report post

66 replies. Join the discussion

I would be interested. We are in lower bucks county pa

Report post

I am interested. We are in Absecon, nj

Report post

In Mullica Hill, Nj..Interested :)

Report post

it depends, would it be philly or south jersey? there is a facebook group for Eds: EDS support group for NJ. don't know if they will meet together or not, but check it out if you live in Jersey. Doctors? HA! I drive to Kennett Square PA and now my doctor might be leaving. so I could use all the help i could get support group would be great!

Report post

Hey there is a bj support group that meet every month and we met in central jersey. We have a fb page look for EDS support group of new jersey

Report post

I would be interested. I live in Narberth, PA, and work in Sicklerville, NJ. Anywhere close to either place is fine.

Report post

The people I am meetingcarevin the Mt Laurel- cherry hill area. Sorry,nmybhands spasm and I do a lot better on the phone. I will be in contact this week. I belong to two fabulous FB Ehlers groups. All across the country including UK and Australia. I have tried to join your group and gotten no response. I have an appt with an Ehlers GI specialist at Hopkins and a Genetacist in Boltimore. There is nothing in the Delaware Valley. I will be in touch to give you more info if you want. nothing in the Delaware Valley. Ronnie

Report post

So sorry.myou are about two hrs away. I have info on docs at Hopkins and two amazing FB groups. I will be in touch. Pain is keeping me up. But I at least have some recommendations for you. Hang in there. Ronnie

Report post

I have no idea where you live.mi found four people on the NJ side of Philly. I can get you information about two wonderful FB groups and Hopkins is the closest place with docs who are knowledgable. More later. We will get something going. Ronnie

Report post

I will get back to you . I have information and the names of twovFB groups. Ronnie

Report post

not up for a support group b/c I hate getting in the car. sorry.
But i have to say, I'm in DE and am amazed U Penn or Jeff hasn't gotten a CM/EDS specialist yet. I had my decompression in 2010 at JHU by Dr Weingart & am now being followed by Dr Henderson (I got no relief from surgery) & I'm on a waiting list to see Dr Francomono

Report post

Hey SleepynSj--Its Kristi from FB. i would love to come to a meeting too! Maybe in September. August seems kinda busy for me so i rest in between appointments and stuff.

Hi Zipperedjen: there is a support group for auto-immune disorder group in Delaware, Wilmington. Its at the Kirkwood highway library the third saturday of the month. gee, i think 11am or so. they are supportive and even though you may not have lyme or fibromyalgia, you could trade doctor info or at least go for support. I felt the same way when i lived in DE, going across the bridge seemed like a lot of energy....

Report post

thanks for the info glittered! that's really close to me!

Report post

Interested - in Mercer County.

Report post

I am also on Dr. F waiting list.mivsee Dr. Clark for my gastro stuff in October. If you just want to be phone buddies, let me know. I don't do well using my hands. ronnie

Report post

Hi all,
I live in plymouth meeting and would be interested in meeting though I'm not available weekends until Oct. I would be willing to travel to cherry hill. There was a local phila group that was formed about five years ago but it didn't last very long.I would also be able to attend a meeting near ventnor nj.

I am extremely frustrated by the lack of an EDS specialist/advocate in the phila region. Dr. Reed Pyretz at HUP only treats vascular EDS. When I called, his office told me that if I have EDS-H, which I do, then I should see Dr. Francomono in Baltimore. I did take my daugther there five years ago, but it is ridiculous that there isn't anyone in the phila area to see. Maybe we can try to enlist someone to take an interest in this?

I drove to Bethesda last week to see Dr. Jan Dommerhalt (bethesda Physio) (sp?) because I couldn/'t find a local PT who understands EDS. I do think it was worth the trip

I wasn't aware of a local facebook group, but will check into that so thank you for posting.

Report post

Would be happybtontalk on the phone. It hurts my hands too much to e-mail and I make too many mistakes. Ronnie

Report post

We are having our first Philly, SJ ehlers meeting tomorrow at Starbucks centerton square at three. So far, two of us. Itvis a start. Sorry, such shortnotice, zebras. Right now, I am under a time gun. We can work out kinks. Ronnie center ton square is in Mt Laurel on 38.

Report post

Yes everyone, we would love to see you at Starbucks near 4 Centerton Road, Mount Laurel NJ at 3pm on Monday. If not, we can schedule some other meetings later, when everyone or most everyone is available. We can provide support to each other and trade doctor information.

Report post

Zipperedjen: I sent an email to Maxine to double check the date and time this month, I'll post when I hear from here again. there is a woman that attends, she has sons who have EDS, she is the one who gave me info on it initially. Also, they have great advice for applying for disability, and which doctors are helpful for pain relief and which places to avoid. Hope it helps, kristi :)

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support EDNF

Help the Ehlers-Danlos National Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Ehlers-Danlos National Foundation

Discussion topics

Community leaders