New member

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Subj: Re: Welcome to Rpolychondritis

Date: 8/22/01 10:16:38 AM Pacific Daylight Time

From: junisung@...

(=?euc-kr?q?=C0=FC=B9=AE=BC=BA.=20Moon=20Sung=20Jun?=)

To: Rpolychondritis-owner (Rpolychondritis Moderator)

Hi, Angie.

Thank you for the acceptance of my entering into your

RP club.

I could not find any place in your club to intorduce

myself yet. Thus, I would like to introduce myself

here briefly.

My daughter is suffering from RP since June 2000, when

we were living in South Korea. In her case, the

development of symptom went so fast that she could not

help taking an operation for tracheostomy on her neck

at the end of June 2000, while her doctors and I did

not know even the name of her disease. It was a month

later when her doctors assumed the name was RP after

endless tests and investigations including two

biopsis.

Her doctors said they had no experience to treat this

rare disease in Korea. The case reports on medical

jounals were the best reference for the suitable

treatment for her.

Now my family are living in better environment of New

Zealand. In these days, she is suffering from ear and

eye troubles, reling on 60mg of prednisone per day and

some other medicines, and Vegan diet. The cartilage of

her auriculas became collapsed(deformed and softened)

and inner ears are being attacked for two months. Her

doctors are trying to control it but the relieving the

symptom seems to be very hard. Due to a side-effect of

high dose of PD, she loses her vision

temporarily(about a half hour).

She is only 14 years old! Possibly one of the youngest

RP patients in the world.

I want to get valuable information for taking care of

my daughter, from your members' experience in all

respects. My current interests are 1)when the healing

method against RP is expected to become available

2)the haemopoietic stem-cell transplantation can be

applied to RP effectively and 3) For exect Vegan diet,

what the ingrediants are to be avoided when purchasing

daily food.

Your kind advice or guide would be highly appreciated.

Best regards

MS Jun