Conference moira::parenting_v3

926.0. "PORPHYRIA child" by NOVA::THERIAULT () Tue May 28 1991 11:40

 Hello Folks, I've posted this entry into the MEDICAL notes conf. as well.

 I'm looking for information on the disease/genetic disorder called
 PORPHYRIA.  A neighborhood boy has this, and is hoping to find other
 kids/people that have it as well, so that he may communicate with them via
 mail and share thoughts and experiences. His parents are also hoping
 to find more info and maybe even some insight as to how other parents
 have been affected by it, and have learned to accommodate to this particular
 lifestyle.  Brian is 9 years old, and is an otherwise healthy, normal, 
 average baseball playing kid.  He's been categorized as type: ERYTHROPOETIC
 PROTOPORPHYRIA, also know as AIP (ACUTE INTERMITTENT PORPHYRIA).
 
 From what little I know of it, this disease keeps Brian from direct
 sunlight. Exposure for a short period of time can result in nausea, fainting,
 and even hallucination.  He is currently medicated for it, but an 'end-all' 
 cure appears painfully slow in coming. 

 Anyway, surely you can image that as a parent of a 9 year old boy, 
 keeping him from direct sunlight, especially in the summer months, can be
 quite a task. 
 I welcome all information, and on behalf of Brian, thanks in advance.

Mike

    I saw an article in "People" magazine several months ago about two
    children who have this disorder.  I'm sorry I don't have very concrete
    information, but perhaps a trip to the library in the periodicals card
    file might help locate the article?
    

    It may not have been the exact same disorder, but I believe 20/20 did a
    segment on sibling girls who have severe reactions to sunlight (I think
    it took the form of 2nd- or 3rd-degree burns, not sure what else).  A
    transcript of that segment might be available if you write or call
    20/20, and they may have a listing of support groups or a bibliography
    available (worth a shot).
    
    Leslie