I would like to know if anyone found out they had FMD then possibly found to have Ehlers danlos sydrome. The doctors have been mentioning this but it is not yet diagnosed. I only have flexable joints and recently painful joints, which I did have as a child but for some reason it has come back to haunt me.
Dear EDS,
I was diagnosed with FMD of the bilateral renal arteries over 2 years ago, and when I saw Dr McDonnell in Baltimore, she diagnosed me with Collagen V connective tissue disorder which is a type of Ehlers Danlos and she says that’s the reason I have FMD, which they also found in my carotid arteries.
Rad RN
---- AID fmd-cpt8113@lists.careplace.com wrote:
Hi there: if you go to the FMDSA.ORG website and look at Dr. McDonnels research abstract you will see they are researching between FMD and E Danos and other connective tissue diseases.
Hope this helps.oxoxmimi
I too am very flexible. I do not know what type of ehlers danlos I have. But both of my parents have characteristics of EDS. So I got a “double whammy” as Dr. McDonnell says. I have painful joints, fibromyalgia, arthritis. Dr. McDonnell said that is why I have FMD.
GG
I would register for Dr. McDonnell’s study - shei si in BAltimore and you can get the forms to fill out on the FMDSA web site
What is EDS??? I just found out that I have FMD and I’m wondering if I should worry about EDS.
EDS is lack of collagin to the joints and skin. FMD is lack of collagin to the arteries. The same genes are involved. The NIH is doing a study to see how many have both. I have both. The symptoms are basically the same. FMD is normally high BP, aneurysms and strokes. EDS is arthritis, knee problems, hip problems, backaches, easy bruising, poor wound healing, eye problems, etc. Many FMDers use chiropractors for pain, have cataracts, arthritis, and knee problems. You DO NOT need to worry about it being a separate thing. It just explains the many symptoms that all of us have. Like if you develope a cataract- you will not find an article that relates it to FMD. You will find tons that relate it to EDS. Dr Naz is finding many edsers with FMD too. What we have done is found a common link. Like FMD will probably be called a new form of EDS in the future. Once FMD is catagorized under EDS- then research will leap a hundred years ahead because EDS is better known and researched. There are different types of EDS(Ehlers Danlos). Only 3 include the arteries. So many people with EDS do not have FMD.
----- Original Message -----
From: “laura2916” fmd-cpt8113@lists.careplace.com
To: dbuck5@embarqmail.com
Sent: Monday, March 31, 2008 9:13:34 PM (GMT-0500) America/New_York
Subject: Re: [fmd] About EDS
Thank you Melva! Now which 3 types of EDS include arteries?
Gina
Presented at the American Society of Human Genetics Annual Meeting, Oct. 2006
A cohort of patients with generalized Fibromuscular Dysplasia and features of Ehlers-Danlos Syndrome: A new phenotype. N.B. McDonnell1, J. Yang1, W. Chen1, B. Griswold1, C.A. Francomano1,2. 1) National Institute on Aging, NIH, Baltimore, MD; 2) Harvey Inst Human Gen, Greater Baltimore Medical Center, Baltimore, MD.
The Ehlers-Danlos syndromes (EDS) are a heterogeneous group of hereditary disorders of connective tissue. Vascular dissections and aneurysms are a cardinal feature of the vascular form of EDS (VEDS) caused by mutations in COL3A1. Loeys-Dietz syndrome, a closely related phenotype, is caused by mutations in TGFBR1 or TGFBR2. We have identified a group of patients without mutations in COL3A1, TGFBR1 or TGFBR2 who presented with arterial dissections and aneurysms as well as stenotic lesions with a diagnosis of fibromuscular dysplasia (FMD) by pathology or radiology. Varying features of Ehlers-Danlos syndrome, such as atrophic scars, velvety or stretchy skin, joint hypermobility as evidenced by a high Beighton score, history of articular dislocations, uterine prolapse, joint pain, pectus deformities, pes planus and scoliosis were also present. Several of the patients had a family history of premature death from vascular events, as well as a family history of joint and skin abnormalities compatible with an autosomal dominant inheritance pattern. There were no reports of uterine or bowel rupture, or pregnancy related death in personal or family histories. The facial features were not characteristic of VEDS or Loeys-Dietz syndrome. The first patient identified was a 44 year old woman who had a history of carotid dissection, ruptured cerebral aneurysms, FMD of renal arteries and iliac vessels, multiple atrophic scars, frequent joint dislocations, and stretchy and doughy skin. A cohort of thirty patients with this syndrome has been identified and detailed phenotype and family history information has been assembled. The etiology of fibromuscular dysplasia is thought to be heterogeneous, with genetic and environmental factors proposed as possible contributors. Our findings suggest that there is a previously unrecognized variant of EDS, distinct from the VEDS and Loeys-Dietz syndrome, with FMD as a major clinical feature in addition to the skin and joint abnormalities.
** Veds and Loeys-Dietz and FMD
----- Original Message -----
From: “GG” fmd-cpt8113@lists.careplace.com
To: dbuck5@embarqmail.com
Sent: Tuesday, April 1, 2008 6:55:57 AM (GMT-0500) America/New_York
Subject: Re: [fmd] About EDS
Melva,
Thanks for the explanation of the overlap of EDS and FMD. I had difficulty fully understanding the NIH study report. You gave an excellent road map for the direction the study is heading, and for possible ourcomes that will benefit all of us.
I greatly encourage elgible individuals to partake in the study. My 3 days at the NIH study were a positve, and insightfull experience. Now my daughter is enrolled. What a gift for myself, and the generations to come.
ADK