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#108144 - Sat Jun 30 2001 12:34 PM Rare Diseases
vikan Offline
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Registered: Thu Jan 18 2001
Posts: 404
Loc: Casselberry Fl  USA  
I created a quiz last month on rare diseases. I was very surprised how often it was played. Then yesterday a FT member contacted me about the quiz and asked if I had heard of Valley Disease. The member's aunt had died of this disease. I had not hear about it and now doing some research about it on the net. I wonder if any other FT members have friends or family that suffer from rare diseases and would like to share them with me so I could include them in a more personal to FT, Rare Disease Quiz.

[ 06-30-2001: Message edited by: Vikan ]

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#108145 - Sat Jun 30 2001 03:09 PM Re: Rare Diseases
sue943 Offline
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Registered: Sun Dec 19 1999
Posts: 37344
Loc: Jersey
Channel Islands    
There is an organisation in the UK called Contact a Family. It is intended for the families and friends of children with rare conditions, it provides information and I understand they can put people in touch with each other when required.

Their website has very useful information about many conditions and diseases and is most interesting to visit.
www.cafamily.org.uk

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#108146 - Sat Jun 30 2001 08:58 PM Re: Rare Diseases
vikan Offline
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Registered: Thu Jan 18 2001
Posts: 404
Loc: Casselberry Fl  USA  
Sue, Great site thank you!
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#108147 - Sat Jun 30 2001 09:23 PM Re: Rare Diseases
Linda1 Offline
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Registered: Thu Sep 30 1999
Posts: 11250
Loc: Munchkinland
I assume you've also heard of NORD (National Organization of Rare Diseases) - NORD That's a pretty typical starting point, so I'm pretty sure you've already seen it, but I wanted to mention it anyway, just in case.

I haven't heard of Valley Disease. When you find out more about it, please let us know. Medicine is an interesting field, so I'd be interested to hear more about this.

[ 06-30-2001: Message edited by: Linda1 ]

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#108148 - Mon Jul 02 2001 08:49 PM Re: Rare Diseases
vikan Offline
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Registered: Thu Jan 18 2001
Posts: 404
Loc: Casselberry Fl  USA  
Linda 1 - Valley Fever's real name is Coccidiodomycosis, it is caused by a fungus that grows in the soil in the South Western United States and North Western Mexico. Spores of the fungus become wind-borne and are inhaled into the lungs. Most of the people that contact the disease will have acute pulmonary coccidiodomycosis that is almost always mild and resloves without treatment. Chronic pulmonary coccidiodomycosis can develope 20 or more years after the initial infection, lung abscesses can form and rupture releasing pus between the lungs and ribs.In the disseminating form, the infection can pass to the bones, liver meninges, brain skin heart and pericardium. The course of the disease may be rapid for immunosuppred patients. Because fungal spores are found in abundance around rodent burrows, Indian ruins and bruial grounds- in these settings infections are more likely to be sever because of intensive exposure to large number of spores.Occupations at high risk are construction and work involving disturbing the desert soil, argriculture and archaeology.Pregnant woman are vulnerable, particularly in the third trimester. If serious systoms occur they will be treated with antifungal drugs that are disagreeable and toxic. A good site is http://www.arl.arizona.edu/vfce/index.html
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