Fibromuscular Dysplasia
What is Fibromuscular Dysplasia?
Fibromuscular Dysplasia is a rare disorder characterized by abnormal developments or growth of cells in the walls of arteries that can cause the vessels to narrow or bulge.
Last updated 5 Oct 2009, 12:45 AM
5 Oct 2009, 12:45 AM
Just checking in to see if anyone new..Alway's looking for others to talk with and share info etc. Rainy
Last updated 28 Mar 2009, 02:09 PM
28 Mar 2009, 02:09 PM
Sorry to hear of all the complications that Mary hs had.. How is she feeling now? What B/P meds is she on now? You both must have been frieightened to say the least when her pressured soared that high. I don't remember if you said that she had dissected an artery before. That was something that happened when mine tore. Fortunatly(sp) MIne has been healing nicely on it's own. Pretty amazing what our bodies can do. I hope that Mary is feeling better and that she will be on the mend soon. She sounds like a very strong person and lucky to have apartner that is as supportive as you. Take care and post back when you get the chance.. Yes this FMD stuff !! UGH!
1 Mar 2009, 02:14 PM
Idgie Glad to hear that Mary's surgery was success.Hope that she is healing and feeling better everyday. sounds like she has been through quite a lot and is a very strong person. She is lucky to have apartner that is as supportive and involved in her health as you are. Hope that by now she is feeling much stronger. Too bad about the artery not being able to be donated.
9 Feb 2009, 06:13 PM
Just a post to say hi. How long have you had FMD? Hmm I know there are a lot more of us out there with it.I've applied to be in a study at the NIH in Baltimore. I have heard many great things about the Dr conducting the study from other FMD patients. I haven't had much luck in finding a specalist around here.. I have it in both of my internal carotid arteries.Where is yours located?
Last updated 15 Feb 2009, 03:05 PM
15 Feb 2009, 03:05 PM
Wow Iit was so great to see your reply! Yes FMDSA is the site for info. I've been a memeber since I found it !! You must have contacted Pam Mace.. The most wonderful people!! I'm so glad that you were able to get your partner the care that she needed.!! OMG just talking to other people helps do much. I have contacted the NIH about the study and have been consented in, sent in blood. Still hoping to get to the onsite study in Baltimore with Dr Mc Donnel. There is another site on Yahoo where at lot of FMDer's post.So many with fms in kidney's too. So much I want to say LOL My mind is racing but my fingers can't keep up.Please keep in touch . I;m alway's looking for any new info on FMD that's how I wandered to this site glad I did.. Don't worry about writing too much.. It is alway's so good to hear about other people's experiences and share information.. Lorraine
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CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
- Complete the screening form.
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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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saying hi
Created by lorraine230 | Last updated 5 Oct 2009, 12:45 AM
hi Idgie
Created by lorraine230 | Last updated 28 Mar 2009, 02:09 PM
Idgie
Created by lorraine230 | Last updated 15 Feb 2009, 03:05 PM
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