Leukodystrophy

> Leukodystrophy > Stories

ALD/AMN

My father had AMN but was misdiagnosed as having MS. He died at the age of 49 due to adrenal failure. My nephew Danny started having problems when he was about 9 years old and that is when the diagnosis of ALD was given and we figured out that was what my dad had.

My sisters and I were all tested and told that we were female carriers of ALD. There are 5 of us. At the time of diagnosis around 1984, we were told "don't worry" females are carriers and do not develop symptoms just males do. But we now know that this is not true, females do have problems from this disease.

My 3 older sisters have medical diagnosis of problems related to AMN (the adult onset of ALD). I have neuropathy in my legs and feet and other health problems which I think are related to this disease. But there are very few doctors who are familiar with this disease so it is difficult to find a doctor who can help us. I am originally from Toledo, Ohio and 3 of my sisters still live there. I now reside in Ft. Myers, Florida.

Daine,

Are you related to Garry and Kim? I grew up around Danny in Toledo, my father and Danny's father were best Friends!! Hope you see this and you can send me an email to: zoom1011@centurylink.net I live in Cape Coral

Thoma Z

Posted 7 years ago by thomas

Hi Thoma,

Yes! I am Gerry and Kim's Aunt Diane. Their mom Cathy is my sister. What is your father's name? Does he keep in touch with Gerry Sr.?

I live in Cape Coral now, since April of this year. What a small world that you made this connection with my story and we both live in Cape Coral--far

away from our home town! I hope you have a wonderful Christmas!

Diane

Posted 7 years ago by Diane

Dianetics,

OMG, İ REMEMBER YOU, I AM TOMMY, MY FATHER IS THOMAS ZITZELBERGER SR. GARY, SR CAME TO MY MOM'S FUNERAL ALMOST 9 YEARS AGO, MY SISTER AMEY I THINK HASHE TALKED TO KIM, YOU WILL NEVER BELIEVE ME, ON HOW I FOUND YOUR POST, I WAS TELLING MY HUSBAND ABOUT THE " PLACE " FAMILY AND DANNY, AND THE MOVIE Lorenzo's Oil!! AND HOW I SAW DANNY DEGRADE SO FAST!! WE ALL GREW UP TOGETHER, AND I REMEMBER YOU AND THAT CATHY'S OTHER SISTERS, AND YOU!! WE LIVE IN THE NW CAPE, WOW I AM SO BLOWN AWAY RIGHT NOW!!!!

THOMAS ZITZELBERGER II

Posted 7 years ago by thomas

HATE AUTO CORRECT, SHOULD HAVE SAID " DIANE"

Posted 7 years ago by thomas

World map of Leukodystrophy

Find people with Leukodystrophy through the map. Connect with them and share experiences. Join the Leukodystrophy community.

Leukodystrophy diet. Is there a diet which improves the quality of life of ...

How do I know if I have Leukodystrophy?

How is Leukodystrophy diagnosed?

What is Leukodystrophy

What is the history of Leukodystrophy?