Ed Izenstark

Team Captain #iamthedifference Illinois Chapter Team Hope Walk

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Hi, I'm Ed.  I am a 31 year old loving husband, father to two amazing sons, a very beautiful daughter and a very silly puppy.  I am a HD warrior.   I love long walks on the beach, the stars at night, and participating in clinical trials. 

It all started when I was adopted with no family medical history to reference. Many years of strange symptoms, multiple admissions and plenty of sleepless nights later my fate rested on the Cook County Court.   I was appointed a confidential intermediary who tracked down my biological donors and (with court orders in hand) collected my medical history.  On page three, buried at the very end of page there we were left with two words "Huntington's chorea".   

There was no clear evidence or direction as to if it was maternal or paternal but we knew the next step was genetic testing.  

After a few failure appointments at facilities that were genetic testing centers but were unaware what Huntington's Disease is, we finally found Dr. Bega and his amazing team at Northwestern.

Huntington's disease (HD) is an inherited disease that causes certain nerve cells in the brain to waste away. People are born with the defective gene, but symptoms usually don't appear until middle age. Early symptoms of HD may include uncontrolled movements, clumsiness, and balance problems. Later, HD can take away the ability to walk, talk, and swallow. Some people stop recognizing family members. They say that having HD is like having Alzheimer's, Parkinson's and ALS all wrapped up into one miserable disease. 

I'll never forget the day that his nurse, Mickey, called and said I need to come back a month sooner than scheduled.  Not in a week, or anything like that.  We needed to go now.  We made it there the very next morning. My wife, my son Chase and Paisley and I went to meet with the doctor.   We got my results and we were stunned.   We never would have guessed this could be our new reality.  We never thought our perfect family could be cursed.  Valerie didn't marry me thinking she would have to care for me, trapped in my own body. God forbid care for one of the kids like that. Either way my son Zayden needed to get picked up in a hour so we needed to deal with it later. 

As hard as it was, Valerie and I held it together until all the kids were asleep and then it hit us, it hit us hard.  This doesn't only affect me, this affects all of us.  All 5 of us fighting a disease with no cure.   

Seems a bit hopeless, but that's where HDSA comes in. 

The associated press wrote an article about my struggles obtaining my medical history, and the story was printed in over 170 papers nationwide!  

chicago.suntimes.com/news/adoption-records-transparency

I was contacted by an amazing social worker. Emily, who was willing and eager to listen.   I told her the whole story and she offered me support, resources and some hope that I didn't think existed.   

Through HDSA I found HSG (Huntington Study Group) and my new best friend Kristen.  HSG is a organization that runs and manages clinical trials and she helped me enroll in SIGNAL.  

As so many have asked why I would be a test mouse?  Why I would take the risk or the time for something unproven, to me, the answer is simple.  

It's because in my family, we fight. 

Every couple of weeks I fly an amazing airline (I love Southwest) to Nashville TN for my treatments.   At Vanderbilt I have a dedicated team, Phillip, Jennifer and Dr. C who take amazing care of me.  They are patient, kind, caring and above all else give me the hope, strength and courage that gets me through. Along with treating me like royalty they give me a chance at a longer life.  A gift so awesome, a gift so undefinable, that words cannot express the gratitude, love and respect I have for them. 

This trial, VX15 has been a life saver for me.  It gives me what I need to have hope.  It gives my family hope that it's all going to be okay and we use every drop of that hope to fight.   

I won't allow HD to destroy me, or my family.   I don't care that each of my children have a 50% chance of inheriting this curse of a disease because I know the cure is out there.   I choose to believe that with good work, in trials like VX15, that a cure will be found and it will save my life.  If not, then the science that I was a part of will save someone else's. 

All of me, my family, our hope is thanks to HDSA and HSG!

So all of this is to encourage anyone to help us in this journey of hope and come together as a team. Team #iamthedifference in the HDSA Walk of Hope on May 21st in Naperville! Join our team or just consider donating to the cause because every little bit helps! 

Join my family as together we kick Huntington's ass

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