Re: Vasculitis and CF

[Guest guest]

I have had it all my life--they usually just adjust the

Vitamin E downward a bit in my case.

Cheers! Best of luck and of course, Love,

n Rojas

Vasculitis and CF

> Does anyone have any experience with CF and vasculitis? Our 33 year

> old daughter w/CF has developed petikia or petichae (small pinhead

> sized red dots to most of us) on her legs, feet and elbows. They

> are not raised, don't itch or hurt. The urgent care doctor said it

> was vasculitis and gave her a Prednisone pack. The steroids are

> long gone, but the bumps continue to move to new areas. Here's what

> I found:

> " Vasculitis is defined as inflammation of blood vessel walls and may

> occur de novo or as a result of a variety of insults including

> infection.... Vasculitis is a recognised but unusual complication

> of CF. Whilst vasculitis may present in childhood, the majority of

> cases occur in patients over 20 years of age.....The underlying

> mechanisms of vasculitis is not fully understood, but is likely to

> reflect a combination of either an atypical response to infection or

> drugs on a background of genetic predisposition. In CF related

> vasculitis, persistent bacterial airway colonisation has been

> suggested as one of the most likely contributory factors. The

> continuous presence of bacteria in the lungs of patients with CF

> induces a strong immunological response locally and systematically. "

> As our daughter says, " Great, just another complication of having

> CF! "

> We worry because all the CF doctors are in California for a

> conference and some of the causes of vasculitis are serious blood

> disorders. Anyone run into this?

>

> Babs and Shaw Skillings

>

>

>

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> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

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