Thursday, January 26, 2012

Getting Deep with Khloe

Hey lovelies,

Today's post is a bit different from my normal. It doesn't include pictures, or ranting or fashion but it IS important. At least to me. I'm going to get a bit personal so if that isn't your cup of team you can pretty much stop reading now.

I wanted to start of with a little background on myself. I am a first degree reletive of someone with Multiple Sclerosis. My mother had MS, my mother's youngest sister has MS, though a completely different form. My father's cousin has MS. My best friends mother had MS... Are you sensing a pattern in my life? You should. For a good portion of my life I was surrounded by people that have a horrible, noncontagious disease. Each person I have ever encountered with MS has had a slightly different form. Because MS effect so many people in so many different ways. For my mother her MS attacked her brain. She went from the Vice President of a major bank, to sometimes forgetting who I was. For the last 5 years of her life I was her primary care giver. I saw first hand how someone so alive and vital could wither into a shell of their former self. My Aunt's MS is completely physical. In her early 20's she went from a quirky, hyper woman to someone who has no control over any part of her body. At an age well below senior status she is now confined to a bed in a nursing home. On the flip side there are people who show almost no symptoms. Sometimes they can live an almost normal live and have very little episodes. I've seen a young woman hassled and accused of being a drunk because her legs suddely stop working correctly. I've heard people laugh when someone with MS tries to say a simple phrase and the word in their head isn't the word that comes out of their mouth. At the same time I've also been whitness to ignorant doctors telling people that MS is all in their head. It's a cruel disease.

Understanding this you can see why when I have trouble coming up with a word. Or when I do something odd I always hear that whisper in the back of my mind. "What if..." There no real way to say why some people get this disease. It's been linked enviormentally, genetically and just about anyway you can think. So when I happened upon a post in SL for an ongoing study you can imagine my surprise..

Researchers from the Harvard Medical School, Brigham and Women’s Hospital, and Partners Multiple Sclerosis Center are recruiting study subjects who have at least one first-degree relative with a diagnosis of MS. A first-degree relative could be a parent, sibling, or child of a person with MS, and the study is limited to those between 18 and 50 years of age.

The goal of the study is to identify the genetic, environmental and immune profiles that may increase a person’s risk of developing MS.

There is no cost to participate in the study, and participants can reside anywhere in the US.

Dr. Philip De Jager and his team are looking to recruit 5,000 first-degree relatives of MS patients to donate a saliva sample for DNA analysis and complete an online questionnaire about neurological history, family history and potential environmental exposures.

Information collected from this study will help Dr. De Jager and his team pinpoint specific genetic, environmental and immunological factors that may increase a person’s risk of developing MS. These findings may allow for earlier intervention to slow down MS or to help develop strategies for preventing the disease. To read more about the background of genetics in MS, as well as more details about participating in the study go to

The GEMS (Genes and Environment in MS) study is led by primary investigator Philip De Jager, MD, PhD, a Harry Weaver Neuroscience Scholar of the National MS Society. The study is privately funded.

I actually signed up and am in the first stages of approval at this point! If you think this is something you are eligible for I strongly suggest you look into it. If you opt out of anything beyond the DNA test (mouth swabbing) and a few questionnaires you can still be of help to soo many people.

Okay I promise not to harp on everyone any more. I just felt it was something I had to get out there :) More fashion next time. scouts honor!

Until Next time! XOXO


Alexx Usbourne said...

<3 u Khloe!

Khloe Nitely said...

Hugs Alexx

And omg my auto correct made me sound illiterate tonight .yeesh

Isabela Loring said...

Thank you for the information I sent it on to people in my life that would qualify for this. Hugs you warmly.

Jayme Carolina said...

I can never say enough how much I WUBS my Khloe. She fell into my life and even though I was slow dragging she still let me keep her!!! =) I am so very proud of you for opening a part of your personal life in an effort to help people you do not know. You are the awesome sauce in my life girlie!! Hugs always.