SV: Re: SV: The little ones levels are elevating again, in pain again

[Guest guest]

Wow, thanks, I will definately ask about that! Do you take vitamins

for the deficiency? How did they find it? Blood or biopsy?

Thank you!

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> Hi !

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> I want to tell you my story, in case it could be some help for

you. It might not be much of comfort but I hope it can give you some

thoughts. I really hope you get the biopsy done very soon and get

answers. From my experience the worst part is not to know.

>

> I have had AIH since I was a child (I'm now 38 and have two

daughters of my own). It was discovered when I was 5 years of age

but the doctors said that I had had it for many years before. Nobody

understod why I was sick all the time with all kinds of infections

from colds, urinary infections, ear infections, lung infections,

constant nosebleeds (all those nights we had to rush to hospital in

the middle of the night because the bleeding would not stop, or when

I was playing outside with friends and suddenly I started bleeding

like crazy..), my stomach was swollen like a balloon and my legs and

arms were very thin. I spent a lot of my childhood in hospital. And

nobody knew to look at my liver values until I turned yellow.

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> I was isolated for a month, first at hospital then at home,

because they didn't know if it was contageous... (A terrible thing

to do to a five year old I think now afterwards. But the doctors

didn't know back then. Today this would never happen.)

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> My lungs were also malfunctioning and it turned out that I had

Alfa-1 Antitritrypsin deficiency. It is better today and I can

breathe properly and do not get infections that often.

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> I didn't get a proper diagnose until I had my first child. I got

very sick, lost a lot of weight and turned yellow. Not until then

did I get to see a specialist who could tell me that I had AIH and

could get the proper treatment.

>

> My mother had a malfunctioning thyroidea, struma, and had it

removed when I was just a baby, and my father has rheumathoid

arthridis. The doctors believe this can be one of the reasons that I

got AIH.

>

> Doctors today are much more aware of liverdiseases than a couple

of years ago, and biopsy is one of the best ways to be able to get

the right diagnosis. Today I know that I have the type of AIH that

usually has its debut as child. The other types are usually

discovered in teenage girls or women 40-50 years of age. (This is

what my doctors have told me). Although more and more men are

disgnozed with AIH today.

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> Take care!

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> Nina!

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