70520850 - ProfilesArchive

About Me

Extended Network Banner made with MyBannerMaker.com! Click here to make your own!Layout Provided By FreeCodeSource.com - Myspace Layouts WE ARE SADDENED THAT MICHAEL AND HIS FAMILY WILL BE IN GUAM SERVING IN THE NAVY FOR THE NEXT 3 YEARS. IT WILL SURELY SEEM LIKE AN ETERNITY!! WE WILL BE AWAITING YOUR RETURN WITH OPEN ARMS!!! GOODBYE AND GOD BLESS YOU ALL AS WE HAVE MEMORIES TO HOLD US UNTIL YOU RETURN. Be sure to click on pic to see captions underneath.I was born in a small town hospital located in Reidsville, NC. Needless to say when I was born, everyone knew there was something different about me. Oh my goodness, what do we have here.....An albino!!!! The doctors of coarse told my parents not to worry. "Just keep her out of the sun, and help her with visual aids as she gets older" So, my parents took me home, and tried to follow doctors orders. Later on I went to public school with everybody else. My years at school were tough, becasue other kids picked on me especially since I not only looked different from them, but I had to read everything while holding it up to my nose (I was legally blind). Needless to say the friends I did make were very special to me and still are to this day. During my 3rd year of school I became very sick with what was known then as Crohn's Disease. As a matter of fact, I was in and out of hospitals quite a bit. My poor parents were even accused of abusing me becasue of all the bruises I would have when I would come into the emergency room. I even missed my entire 8th grade year of school and was homeschooled. I had my colon removed at age 13. You would think with all the symptoms I was having someone would have picked up on the real culprit. Not only was I albino, but at age 38 I learned I had a disease called Hermansky-Pudlak Syndrome. Which albinism can be a symptom of. My hope is that I can share some of my knowledge about HPS, and some of the ups and downs of everyday life through the eyes of someone with Hermansky-Pudlak Syndrome.

My Interests

I'd like to meet:

LEGALLY BLIND WITH ALBINISM, CANDICE AND CRYSTAL WERE DIAGNOSED WITH HERMASNKY PUDLAK SYNDROME AT THE AGE OF 13. ALTHOUGH THEY ONLY USE A LITTLE OVER 60% OF THEIR LUNGS, THEY HAVE THE MOST BEAUTIFUL VOICES, AND A WEBSITE CALLED WWW.ANGELSINVOICE.COM CHECK OUT THEIR NEW CD, AND BUY A COPY. YOU WON'T BE DISAPPOINTED!! THE SONG "COLORS OF THE WIND" HAS BECOME THE THEME SONG FOR THE HPS NETWORK.

My Blog

Caught Between Dark and Light

ABC news did an documentary on albinism, Unfortunately they did not mention HPS. However one of the videos you can watch has to do with the heinous acts going on in Tanzania. It is Part 3 in 20/20's...
Posted by on Sun, 04 Oct 2009 13:12:00 GMT

Help Holly Win!!!

Hey folks,I know it has been awhile since I posted, and yes I am still alive. It has been quite a busy summer, and if I ever catch my breath I will post more, but right now we are just trying to get ...
Posted by on Sun, 27 Sep 2009 21:22:00 GMT

Foundation Offers Medical Grants For Kids

The United Healthcare Foundation, a 501(c)3 organization, is offering medical grants to patients 16 years old or younger who currently have commercial medical insurance, but whose families are facing ...
Posted by on Thu, 20 Aug 2009 09:44:00 GMT

Injustices Just Seem To Continue In Tanzania

I have chosen to leave out the photos due to graphic content. Not only that I can't stand to look at it myself.As Albino butchery increases, Tanzanian courts abandon prosecutionsWARNING: Extremely gr...
Posted by on Fri, 14 Aug 2009 22:07:00 GMT

IMPORTANT!! Perfenidone Trial for Pulmonary Fibrosis/HPS in Jeopardy

As many of you know, this summer there was to be an interim analysis of the results thus far in the Pirfenidone trial at the NIH.The statisticians have met, and the news is mixed.The statisticians dec...
Posted by on Fri, 07 Aug 2009 08:24:00 GMT

More on the albino community in Africa

This is a video I came across on YouTube. I watched it with great sadness.
Posted by on Fri, 24 Jul 2009 19:22:00 GMT

ATS A Foundation For The Future

Below is a video about The American Thoracic Society, and while HPS wasn't even heard of at this conference 6 years ago. It shows we have come a long way as we are mentioned several times. GO ATS! ...
Posted by on Fri, 12 Jun 2009 21:30:00 GMT

Red Cross Defends Albinos Right To Live

Many of you know that I haven't been posting in awhile. I assure you most things are going pretty well. Will try to update more at a later date.As most of you know I've always tried to keep you info...
Posted by on Tue, 09 Jun 2009 20:16:00 GMT

Whirlwind

It seems that life in the Tillman household has been a bit overwhelming. That is why I have not communicated very much lately.So let me just give you a little of the low down. First of all The Human...
Posted by on Fri, 06 Mar 2009 13:29:00 GMT

For Parents of Visually Impaired Children Living in NY

Special Event for NAPVI ParentsArt Education for the BlindArt Beyond Sight InstituteWorkshop introducing our new online resources for parents and educators:- American Identities. Exploring works of Am...
Posted by on Mon, 09 Feb 2009 17:27:00 GMT