Lorenzo Oil: Hi everyone We live with a... - Leukodystrophy Su...

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Lorenzo Oil

PawelK profile image
4 Replies

Hi everyone

We live with a wife in Scotland, but we have families in Poland.

My wife has a brother and sister. A few months ago her brother was diagnosed with ALD, unfortunately he is lying on the bed, doctors say we can not do anything.. my wife still wait for genetic test, But her sister already get result and unfortunately has a defective gene - she has a son 7 yers old, now he is waiting for genetic test in Warsaw.

My question is we can give Lorenzo oil after the tests? without results ? because we have to wait almost two months for the results and each day is so important for as, we do not want to experience tragedies for the second time. Does anyone know if we can safely give Lorenzo oil before the results and in which doses do it?

thanks

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PawelK
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4 Replies
tramynguyen12 profile image
tramynguyen12

Hi, please contact the forum ald connect in facebook asas. I think people in america will help you. Good luck

PawelK profile image
PawelK in reply totramynguyen12

ok thanks for answering

DagmaraMedrek profile image
DagmaraMedrek

Witaj Paweł.

Mieszkam w Polsce, we Wrocławiu. Mam trzech synów z ALD.

Olej Lorenza nie jest czymś co mogłoby zaszkodzić. Ale i myślę, że nie ma sensu dawać go na wyrost. Wyniki testów genetycznych są gotowe do ok. 4 tygodni. Do tego czasu nie dostaną refundacji w Polsce na Olej z Ministerstwa Zdrowia. Można go jednak np. w UK dostać w pełnej cenie. Do tego czasu rodzina może obniżyć w diecie chłopca tłuszcze nasycone, tak by być spokojniejszym. Jeśli będziesz miał jakieś pytania to chętnie odpowiem.

Pozdrawiam

Dagmara

PawelK profile image
PawelK in reply toDagmaraMedrek

Witam,

Dziękuje za odpowiedz, bardzo mi przykro z powodu choroby Pani Dzieci. jak najbardziej skorzystał bym z Pani „doświadczenia „ z podpowiedzią co wykluczyć z diety chłopca do czasu badań bo wciąż czekamy na termin badań a czas ucieka i tak jak Pani powiedziała kolejne 4 tyg trzeba czekac na wyniki ...na szczęście mieszkamy w Szkocji i olej jest juz w Polsce tak w razie w.. oby się nie przydał

Pozdrawiam

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