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Rachelle
Unregistered User
(11/25/02 7:30 pm)
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Melbourne Australia
My daughter, Madison, has FMD of the cerebral vessels (nearly every single vessel). She was diagnosed at 7mths old following 4 strokes. Shortly afterwards, we attended a genetics clinic at the Murdoch Institute, a part of the Royal Children's Hospital (Melbourne Australia). The geneticist ran a number of tests on both Madison, and Phil and I as her parents. Whilst little was able to be determined, the one thing they did seem sure about was that there was a direct link with a malformation of Madison's connective tissues. I don't know much about this, but it was very clear that this was a definite link.

Regards,

Rachelle

bkimpsonnetinsnet
Unregistered User
(12/1/02 4:31 pm)
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hereditary FMD
Rachelle,
What did the doctors mean when they said, "a direct link to a connective tissue disease"? Where they suggesting a hereditary component? Tell me more about this. Also, have you come across a physician named Andrew Bofinger in Australia? He has had info on web sites regarding FMD.
You and Madison are in my prayers--beth

Bonnie
Unregistered User
(9/8/03 8:46 pm)
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Hereditary FMD and best wishes
Bonnie Byron Australia :rolleyes Hi, and like you I send our prayers and best wishes to you Rachelle.This site is invaluable to people affected by FMD and wish to know more. My wife has recently looked further into FMD as she was diagnosed with Renal Artery Stenosis (FMD). We both looked into RAS but it wasn't until recently that we realised that she had type one Medial Fibroplasia in both her left and right kidney arteries that extend into her kidneys. My wife was beside herself and extremely concern after she read about FMD as we were trying for our second baby. This has been put off, maybe indefinately, until we totall understand her situation. I understand that there are various forms of FMD and was wondering if your mothers FMD was progressive or does FMD remain in the intial diagnosed areas.
We both are very concern about the seriousness of FMD and regarding the doctors lack of concern of provision of information regarding FMD. My wife has been told that she had RAS with a side mention of FMD and that all she has to worry about is Hypertension/ preeclampsia. I now am more concerned about her health, whether or not it is progressive and move to her carotid arteries, which has more dire consequences.
I would love to hear you interpretation of FMD and how your mother is coping with the disease/if it is a disease.

I would also like to hear about whether it is heriditary as we have a four year old daughter and we are both concerned about the possibility of her having FMD in the future. :\
I am very concerned about what I have been reading especially when ou mention connective tissue disease and about the seriousness of the situation that some people find themselves in as a result of FMD. I was truely ignorant of FMD and the consequences and therefore lacked the resources to be truely empathetic towards my wife situation and that of others with FMD. As one can only be empathetic if there is understanding and I'm not sure there is a wide spread understanding of FMD. Good luck all and I look forward to chatting with you all

reneeowens
Unregistered User
(9/17/03 9:04 pm)
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FMD-renal arteries
Hi Bonnie. I also have FMD (renal artery stenosis). I don't know how long I had it before it was actually diagnosed. With my third pregnancy, I did spend 2 months on bed rest due to pre-eclampsia. However, it wasn't until 5 years later that my blood pressure really spiked, and I was diagnosed with FMD. Personally, I have had scans of the lower extremities and carotids. I have minimal blockage in the carotids. I am scheduled for an MRA of the head and neck next week. Most of the scans I requested because, like your wife, I want to know if I have it anywhere else. I prefer that my first symptom not be a stroke! So far I have been very lucky and FMD has not been detected elsewhere. Some doctors say FMD is progressive; others say just the opposite. I'm not sure how that is determined, other than if it is found throughout one's body. Some research suggests that FMD is hereditary. I know I am the only known person in my family with this disease. I'm not sure there is enough research to state anything with certainty. Good luck to you and your wife. I hope her FMD is limited to the renal arteries and that it has been fixed for good.

fmdsucks
Member
(9/19/03 11:12 pm)
Reply
FMD
Hello,
I have FMD of the carotids and am now going for my second angiogram of all the other arteries. I have had an MRI/MRA of brain and carotids and that was a waste for me ... it showed nothing.But the angio of carotids and dopplers have shown blockage of up to 61%
in the left side and 41% in the right. I have gotten 5 opions so far and none of them have an answer! One from Kenosha Wisconsin said he can perform a surgery on my carotids ,but they can only go as far as the baseline of the skull... my disease is past that point so It's unlikely I will do surgery.I am on 2 B/p meds and one anticoagulant and aspirin therapy for the FMD, and I now take Bextra for the rheumatoid arthritis I have recently been diagnosed with.:D I will have my second angiogram on oct. 8th /03 and hope that this yucky stuff isn't anywhere else!I am an RN by trade and had never heard of this stuff until June of this yr. when my B/P shot up to 242/142 and thats stroke territory! But I came out unharmed and was sent to a cardio guy and thats when we found our lovely FMD! Never had high blood press. in my life! I am 36 yr/old and have three beautiful girls and hope that someone comes up with something quick! My prayers are with you all! God Bless You! Gina;)

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