Welcome to my journey with Neurofibromatosis type 2, known as NF2, a genetic mutation which causes numerous tumors to grow within my brain and spine. Since 2004, I have undergone radiosurgery and 3 brain surgeries for 7 brain tumors. Life with NF2 is definitely a test of faith and a challenge to keep positive. Join me on my harrowing adventure to keep active and live life to the fullest!
Thursday, May 07, 2009
National Institute of Health (NIH) Study
Check it out!
I just called over the phone today to the NIH to register for a natural history study of NF2. They are currently seeking participants for the study. Go to this link for the details:
Interestingly. When I first got diagnosed in Malaysia, I wanted to participate and assist in research to find a cure for NF by volunteering to become a study subject. But I lived in Malaysia while most NF research is based in the states.
Then, guess what, I happened to seek treatment at the House Clinic, and have had five surgeries here ever since. During these surgeries, they will excise a piece of my tumor and keep it in the lab for the surgeons and researchers at House Ear Institute to study with. So I HAVE become a research subject and be involved in research after all.
Gaga! I am just musing at how sometimes our wishes tend to come true, but not in the way we wanted or imagined,
1 comment:
Interestingly. When I first got diagnosed in Malaysia, I wanted to participate and assist in research to find a cure for NF by volunteering to become a study subject. But I lived in Malaysia while most NF research is based in the states.
Then, guess what, I happened to seek treatment at the House Clinic, and have had five surgeries here ever since. During these surgeries, they will excise a piece of my tumor and keep it in the lab for the surgeons and researchers at House Ear Institute to study with. So I HAVE become a research subject and be involved in research after all.
Gaga! I am just musing at how sometimes our wishes tend to come true, but not in the way we wanted or imagined,
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