Has anyone heard of the Golf Benefit in RI? I saw it on Dr. Herbst’s website. I contacted the chair of it today. He is so willing to help and find a way to make money for DD research. I decided the other day that I am going to take control back. I was thinking that just because my body is pretty much shot that it doesn’t mean that I can’t make a difference. I decided I am going to contact as many doctors that will listen to me about our disease. I decided that I was going to start at the major medical universities and go from there. In the past week I have spoken with more than 30 doctors, at least 10 major medical universities, and a ton of secretaries. LOL. I have called, emailed, done whatever necessary to speak with these individuals. I feel that if I can’t beat this disease I will accept it and do what I need to do to find someone to help on the east coast. I thought that I was going to be able to go out of town to see Dr. Herbst but fact is that my husband is working 3 jobs to support my medical bills. We can’t afford to take the trip. I need to find someone around here that is willing to take this on, no bars held.
OK…back to the benefits. I am working on this too. I want the doctors to hear our voice. I am not accepting the Dercum’s plight, without a fight!
Hey, Hey, Hey, I’m from R.I. and I didn’t know there was anything on research…I’ll find out more and certainly try to go and get info…what a small world. Be back to you all on this one. Thanks for the info…Bev (ladymary)
It’s determined people like you that can make a difference! Bless you
Good for you, @cgold!
There was recently a biker fundraiser for DD in RI. The brother if one of the early member of another group was behind that, and I suspect it will be the same family who came up with this one. Dr Herbst also went to the last one there, and she diagnosed several women while she was at it. You should go if there is any way you can make it.
Hugs and spoons,
Pamela
I just got off of the phone with Dr. Herbst. She said that she is not going to be able to make the golf tournament since she has 2 grants due on the 15th. Yes, it is the same family that you were talking about Peter Lyons and a group of people have formed a Dercum’s Research Fund. This is so AWESOME!!!
Awesome, you go girl!!!
You go girl! CGoldstein…you are a breath of fresh air. It is good that someone has some energy to devote to DD. Too bad about Dr. Herbst…I was hoping you could meet with her. She is so far our only hope. Why is only one doctor interested in us? I would think that a lot of research would be done as our abnormal fat cells may be a clue in curing obesity. I have handed out info to 10 doctors in the last six months. So far only one of my doctors had heard of it. If we all keep giving out the info it has to register at some point with the medical community. Medical conferences are a good place to have or send an advocate. My rheumatologist who is the doctor who had heard of DD…heard of it at a medical conference and diagnosed me. I don’t know if doctors read email but I could send a cover letter with a couple of the good DD articles…I like to one translated from Swedish…to some of the local doctors who are affiliated with OSU Medical Center. I give my doctor’s a sheet with Dr. Herbst’s info on it also. I also use the line drawing showing the fat distribution on our bodies. United we stand!!! Hugs and Kudos…Grandma Sylvia
I have printed material for my PCP but of the other doctors I see, none of them knew about DD. The little surgeon that did the biopsy of one of my lumps just to see if it was a lipoma, must have read up on it (i gave him the web address for Dr. Herbst) because he was telling the others about it when I had my biopsy. Another thing, talking about my excision site on my forearm, it is the strangest scar and surrounding area, sometimes normal looking, then sometimes really puffy and red, even itches, other times a dark purple over and around it. When I saw the cardiologist this month, the PA saw it when taking my blood pressure and said “what happened there”! I had the excision in June.
Ladymary, by any chance are you near a New York Systems? I know that I am not supposed to have them…but, golly they are good.
Hi CGoldstien, I am not near a New York Systems but I am near several places that serve hot weiners and the works…one near my home and one about 8 minutes away…hmmmmmmmmmmm I love them too,haven’t had one in years, what a nice treat that would be, just don’t tell my Dr. ha ha. I think the nearest New York Systems is downtown in Providence, Haven Brothers if they are still down there…we shall see ok? Bev
Sorry Dr H can’t make the fundraiser! I was hopeful you would be able to get a diagnosis that way!
Pamela
Hello all, I googled the following: Rhode Island Golf tournament for Dercums Disease and an article came up by Peter Lyons about the tourney, date and place. It is in October and there is a short story about his wife…I wish I could post it all for you but i don’t know how…take care all…Bev
Thanks sweetie. You can go onto lipomadoc.org and go down to the bottom there is a link. I talked with him and it is his sister. He said that he is trying to find ways to help. What a great family!!! I can’t wait to meet them. My husband is looking forward to the trip back home. He was born in Providence and has family there. I am so excited. Is anyone else here going to it?