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soficrow
Unregistered User
(12/4/02 10:45 pm)
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Discussion paper - compares FMD & AIDS incidence rates
[Really, there is a discussion paper at the end of this little preamble – and boy, I hope it pastes okay. OH No! - it lost the references!!!!! ALL the figures are substantiated. Can someone tell me what to do?]

David’s ISRDN and Rick and Celeste’s fmdfaqs spun me into a vortex of self-discovery and realization. Even though I was diagnosed 12 years ago, I have never faced this illness or really, looked hard for information and tried to understand it. All the stories here have given me strength, and a sense of purpose. Thank you all.

I have written the following document in desperate self-defense, and with a sense of urgency. Like all people who suffer with FMD, I live with the knowledge that I may not last, that my faculties could disappear in a single moment, and that I may not be able to finish. Truthfully, I have learned to cope; I know most of the triggers, and can avoid almost all of them. But it’s still a crapshoot.

I think this paper will be useful for discussion here – feel free to criticize, recommend changes, rip it apart. But be kind – it’s been an exhausting labor of need, and love. I suspect the figures for the AIDS comparison will surprise most of you here – they did me, when I finally got round to calculating them about 2 hours ago. Now I’m just stunned.

The conclusions, implications and recommendations all need work – I deleted all my original stuff when I got the AIDS figures, and didn’t think through the new ones. But I have to stop now, just can’t do any more, and besides, it’s a discussion paper. It needs a group process.

Thanks, and be well,
Lanie Patrick aka soficrow


Subject:        Fibromuscular dysplasia (FMD): Unknown but Not Rare

Summary:        Fibromuscular dysplasia (FMD) is more common than HIV/AIDS, by at least 255%. Like AIDS, FMD is life threatening and incurable: slow, painful degeneration often precedes death. Unlike AIDS, FMD is unknown. FMD urgently requires immediate attention from governments, health agencies, and the medical industry to 1) trigger desperately needed research; 2) speed development of more effective diagnostic techniques and non-surgical methods of treatment; and 3) to ensure the integrity of bio-products collection and distribution systems.

1.        FMD is an extremely serious disease. FMD is life threatening and incurable, but potentially treatable: an arterial disease of unknown etiology, which
a.        Causes aneurysms and stenoses in the arteries, potentially affecting any of the arteries and organs, and several locations in the body concurrently. FMD leads most often to strokes; and
i.        Affects people of all ages, including infants and seniors; but
ii.        Is most typically diagnosed in young to middle-aged women in a female-to-male ratio that is minimally 3-1, and may be as high as 8-1.
iii.        Note: FMD is distinct from atherosclerosis.
2.        FMD Prevalence. Most countries currently classify FMD as a “rare disease,” indicating an incidence rate between .00005% and .0005%. However:
a.        A 4.4% incidence rate of renal artery FMD was found (by angiography, in a donor group pre-screened to disqualify patients who were not in perfect health) at the University of North Carolina’s Division of Transplantation, 1995 to 2001;
b.        A 1.7% incidence rate of FMD in the USA is reported as discovered 35% via angiography, and 65% via autopsy (neither procedure is routine);
c.        The following table compares FMD to HIV/AIDS by number of estimated cases in Canada, the US and the world:
(Note: this was a table, have tried to fix)
Area        1)Population 2)FMD cases at 1.7% 3)FMD cases at 4.4%        4)HIV/AIDS cases
Canada        1)31,413,990 2)534,037 3)1,382,218 4)49,800
USA 1)288,635,370 2)4,906,801 3)12,699,956 4)900,000
World 1)6,260,169,600 2)1,064,228,800 3)2,754,474,600 4)41,800,000

d.        There is no complete body of statistics on FMD occurrence, which might lead to an accurate calculation of FMD’s true prevalence;
i.        FMD affects a variety of organs and systems, and does not “belong” to any one specialty: an FMD case is assigned to various specialties according to the organ primarily affected by the disease. Critical information about FMD thus is dispersed throughout the literature: by organ, and specific artery.
ii.        Many countries have no agency responsible to collect information on FMD from all the various specialties, and morgues.
3.        Recognizing FMD. FMD is extremely difficult to recognize. It is clinically asymptomatic (I.e. It cannot be detected with clinical tests like blood or urine analysis), and according to FMD patients, seems often to present episodically, and differently in its various stages. As well, FMD symptoms change according to the location or organ affected; thus
a.        The medical system generally does not have the ability to recognize FMD before it presents with a life-threatening event (I.e., aneurysm, stroke, renal failure, severe hypertension and etc.):
b.        Physicians are educated to suspect FMD only rarely, and only with life-threatening manifestations: it is not looked for; hence, it is not found until the autopsy, if at all;
c.        No comprehensive profile exists which describes the range of possible non-clinical manifestations of FMD.
4.        Detecting FMD: FMD is extremely difficult to detect (I.e., 65% of FMD detected is found in autopsy ).
a.        Angiography is the only known method of diagnosing FMD;
b.        Both CTA and MRA can miss FMD that is detectable with digital subtraction angiography (DSA);
c.        Even surgical angiography is not 100% reliable: microscopic analysis may be required to detect the presence of the disease even when FMD is sufficiently progressed to present as life threatening:
i.        In one young adult Canadian stroke victim, microscopic analysis was required to identify FMD as the cause of the stroke, after angiography had failed to detect either the disease, or evidence that the disease had caused numerous dissections previously, and healed over;
ii.        Microscopic analysis was required to identify FMD as the cause of stroke in a Canadian infant;
iii.        Note that: Biopsy is even less routine than angiography.
5.        Treatment. Angioplasty is the only known treatment for FMD.
6.        Living with FMD: The FMD patient suffers often significant and disabling effects, including excruciating pain, which cannot be clinically verified, or appropriately treated;
a.        Even when FMD is recognized as a possible diagnosis, angiography is delayed until the benefits clearly outweigh the risks of surgery;
b.        Progressive manifestations of FMD preliminary to life threatening stages are often misdiagnosed, even in the person already diagnosed with the disease;
c.        FMD greatly and negatively impacts quality of life, as well as the sufferer’s ability to contribute productively to society
d.        As FMD is unknown, there are no supports to people suffering from it.
7.        Etiology. FMD’s etiology is unknown. [Etiology refers to the cause of a disease, and by implication, the method of transmission.]
8.        Risks associated with FMD. FMD is life threatening and incurable. It is almost impossible to recognize, detect and diagnose; current treatment options are limited to one risky alternative; the etiology is unknown; and it’s far more common than HIV/AIDS:
a.        While the medical community seems confident that FMD is not infectious or communicable, the facts suggest a need for caution, most particularly with respect to blood, other bio-products, and organ transplantation;
b.        There is a significant risk that living kidney donors might be undiagnosed with FMD, and endangered significantly if left with only one kidney;
c.        There may be a risk that FMD can spread in organ recipients’ bodies.

Conclusions:

1.        FMD is epidemic, even at the lowest recorded rate of incidence (1.7%). It is exceptionally difficult to recognize, detect and diagnose; and as a result, the disease is largely undetected and unreported. FMD’s actual incidence rate likely exceeds 4.4% by several points (the highest recorded rate of incidence).
2.        Most people with FMD die from it before they are diagnosed.
3.        People living with FMD often are consigned to an existence of pain, suffering and uncertainty; and deterred from contributing productively to society.


Implications:

1.        Continued inattention to FMD on the part of governments, health agencies, medical professionals and the medical industry is actually and potentially injurious to:
a.        Individual people with FMD, whether diagnosed or undiagnosed; and
b.        Potential recipients of FMD-tainted bio-products and organs.       

Recommendations:

1.        The World Health Organization, United Nations and individual nations’ governments need immediately to make FMD the highest health priority, and work to:
a.        Determine FMD’s etiology;
b.        Develop effective clinical methods of diagnosis;
c.        Develop non-surgical treatments alternative to angioplasty; and
d.        Find a cure.
2.        Agencies are required urgently to profile the non-clinical symptoms presented by FMD in its various stages and manifestations, and as it affects different organs; and to
a.        Communicate the information, effectively and immediately, to:
i.        Practicing physicians;
ii.        Health clinics;
iii.        Women’s Health Clinics; and the
iv.        General public.
3.       

© Lanie Patrick, 2002. The preceding work is copyrighted; it may be distributed freely for purposes of discussion and education, if the work is credited. Any use of the foregoing material that may generate profit is expressly prohibited without the written prior permission of the author. The author can be contacted at soficrow@hotmail.com or laniepatrick@hotmail.com.

I have had FMD since childhood, undiagnosed till the age of 38 in 1990. My adult life has been punctuated with excruciatingly painful and debilitating ‘episodes’ lasting anywhere from 3 days to 6 months, even years. From 1969 to 2002, for thirty-three years from 17 to 50, I have pleaded with doctors and nurses, been dragged to emergency wards, and gone myself begging for help more times than I can remember. There was never any diagnosis; never any help.

My first clear memory of an FMD-like episode dates back to 1957; I was five years old. I had scarlet fever, and was treated with penicillin. My next major experience with penicillin came during an excruciating FMD episode – and as the result of a misdiagnosis. I was injected with penicillin, and then went immediately into anaphylactic shock and a 3-day coma. My intuition tells me my allergy to penicillin and my FMD are related – but no one knows.

And no one should have to live a life in this way if it can be avoided. It can be avoided: the knowledge exists; it’s on the table, and out in the open now.

At the very least, we will be validated, and find credibility, and


Celeste
Unregistered User
(12/4/02 11:35 pm)
Reply
Discussion paper
"There is no complete body of statistics on FMD occurrence, which might lead to an accurate calculation of FMD’s true prevalence..."

Good job putting this together, it sumarizes and raises lots of important questions. The one I captioned above is the one that strikes me the most and I have been trying to get others involved in obtaining these statistics, but have not been successful. I have always felt that if the statistics are obtained withing certain preables, we could demonstrate the need to involved entities such as NIH in the research of FMD. Perhaps during our chat we can can up with ideas and examine if this is needed or not.

Nice to see you here by the way.

Celeste

soficrow
Unregistered User
(12/5/02 12:22 am)
Reply
Stats
Thanks Celeste. Re: stats - we have enough.

The 1.7% incidence rate recorded by the US government is all we need - that's 4,906,801 FMD cases in the US right now, and 1,064,228,800 in the world!!!!!

(The rate is cited in an article I found here - "Fibromuscular Dysplasia (Carotid Artery)" Authored by Jeffrey P Kochan, MD,).


And remember, a 4.4% incidence rate of FMD was found by angiography in a donor group pre-screened to disqualify patients who were not in perfect health!!! (University of North Carolina, Division of Transplantation).

It looks to me like the FMD incidence rate is way over 4.4%, which is shocking. But we do not need to speculate...



...The really hard thing for me to accept is that whoever compiled those stats knew all about it - so why didn't everybody? Why is FMD unknown?

Lanie

Celeste
Unregistered User
(12/18/02 2:25 pm)
Reply
Your stats
Read again, got the responses. Now, we need to GO there and get the PAPER on the statistics. These can be used for the information approach to organizations.

Lets start rocking on this.

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