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!
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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,
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.
ReplyDeleteThen, 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,