Bob and Daughter,

[Guest guest]

Dear Bob,

My name is and I am now 35. My RP started the same way

's did. On top of the ear problems I also had severe joint

pain and chest pain. I was in a wheel chair right before my DX at age

31 and I want you to know it has been a hellish 4 years for my family

and me but " we " made it. If I really think about it I should not ever

complain because there are many who went many more years then I with

no answers, I guess you can say I was a lucky one, only now can I say

that. I am not saying I am cured by no means but looking back just in

those 4 years I am so thankful (can't believe I am going to say

this) " for Prednisone, " Enbrel and many other drugs available to us.

With my ears nothing would work other than Pulse Steroids (1000 mg a

day for 3 day's for a total of 3000mg in 3 days). They say the human

body can only withstand one pulsing in a life time due to the shock

it puts on the body and only to be given to those who are young and

has no eye and or heart problems. Well we had to do it two times in

four years. At the time for me I thought it was a quick fix as you

may but nothing else was working or I would become very ill from some

of the common med's. Now looking back I feel we did further damage to

my bones from the pulsing, I have major bone loss that I will not be

able to recover the amount I need which is why I feel a wee bit weak

at times and honestly do not know if I would ever allow them to do

that to me again, as the saying goes " live and learn " and at the time

I was told to live 1st then learn, I still can't figure that one out

all I know now is " if I only knew then that I know now " !

My life now is 99% back to normal but the pulsing took it's toll on

me in some other way's, SO when they can tell me no one will ever get

this terrible disorder ever again then and only then will my life be

complete to 100%. I do not know if has children but I want

you to know at the time I had a Four year old so my Mom moved in with

us and watched over her child and her child's child and almost five

years later I cant get rid of her! Thank God for Mom's and Dad's like

you! (we really don't want you to leave)

What really interest me in you're post about was the fact

that the Dr's did " 3 surgeries and loads of antibiotics, " why? did

they detect any form of infection? If so this info could be very

helpful to some of us. Also I recommend that you join the RP

Foundation, they provide up to date info as it comes out and helps

with awareness of RP!

Please hold on to hope with and let her know there are other

young chick's who have gone through what she is now and are all

better now although truth of the matter is time and top notch DR's in

the country and most of all " us " and you to support her back to good

health. Bob, please keep us updated on you're daughter and know we

are here not only for but for the whole family if need be.

Best wishes,

P.

Golden, CO.