Glen Mamer

In Memory

In memory of Glen Mamer

Glen mamer

It is with great sadness that we share the news of a fellow vascular EDS zebra giving up his wings at a very young age, Glen Mamer passed away peacefully during the morning of March 1st 2015 aged 56.

Within days of setting up Annabelle's Challenge shortly after Annabelle was diagnosed with vascular EDS, Glen contacted us and offered his support and kind words of comfort.

During the last two years we have known Glen he has always been in touch through our facebook page giving our family and in particular offering Annabelle words of comfort and love.

Glen will be missed by so many and we are blessed to have his support over the last two years.

Glen Mamer

Jan 18, 2013 7:06pm

Hi my name is glen and i too have eds type iv ... i am 54 years old so Anna may live a longish life like me and i have survived 9 yes nine aneurysms so again eds iv is not a death sentence , i inherited it from my dad who got it from his mom and all three of my dads sister had it also , but i have 4 brothers and 1 sister and only my brother Bob had it but he died of a massive aortic aneurysm so if Anna has any siblings they can be tested by a simple blood test but if Anna is going to a geneticist she will need to have a skin biopsy ( didn't really hurt ) but also one of the parents HAS to have eds type iv also as a person doesn't just get it , it has to be handed down from a parent and it doesn't skip a generation , so either mom or dad has it ....so like i said i have had 9 aneurysms and i have two more but with the help of a fantastic vascular surgeon i have lived this long .. so she will need to have ct-scans probably twice a year but other than that a good family dr. with some experience with the disorder and the geneticist will set you up with all the other dr.s she will need to see ....... so i am living proof that a person withh eds type iv can live a long life so don't despair Anna has alot of living to do ..... if you ever want to ask me any questions feel free to so good luck and just remember to play safe with her.....

Annabelle's Challenge with Vascular Ehlers-Danlos Syndrome

Jan 20, 2013 12:08am

Glen, you are an amazing guy and this has inspired us so much to keep positive for Annabelle. To be honest we are still getting to grips with the this and with the lack of awareness within the medical teams it is our passion to change this and your message reinforces this, thank you! As parents we know one of us might have it. Glen you are great!

so god bless you and Annabelle and the rest of your family and take care of your sweet child......