this isn't just about TV personalities
I know this is a hot topic. I'm sure there are people I know, unawares, who disagree with the scientific concept of using embryonic stem cells for medical research. Heck, I know some members of my own family disagree strongly enough that I wouldn't even dream of bringing up the topic in their company.
But for me this is personal. It's not just about Michael J. Fox. It's not about people in TV commercials. This is me. This is my life they're playing with. It is the lives (I should say, was the lives) of close family members.
It was the life of my mother, who took her own life at the age of 52 rather than continue to "live" (and I use that word in quotes deliberately) with sudden adult-onset MS, which was ravaging her body and her mind to the extent that she was visibly worsening by the day. She had no "good days" left -- not for years, by that point. Sudden adult-onset MS is not necessarily inheritable, in that it doesn't necessarily become inherited as a full-blown disease. But it is genetic, as the predisposition is carried chromosomally.
It was the life of my aunt Vivian, my father's dearest sister, who died of a rare form of Alzheimer's, early-onset Alzheimer's, which is definitely inherited. As far as we can tell (as they didn't used to diagonose the early-onset variety in years past, as they didn't know why some younger people developed what they used to call "dementia"), at least one in every generation of that side of my family get early-onset Alzheimer's. This led to my own decision not to have children (would you, with MS, lupus, and this nastiest of demons all running in your DNA?), but didn't stop my half-brother, who has a goodly clan of children -- I hope none of them develop it, but I don't hold out hope. I don't know which of us in this generation will develop it. Personally, every year I get more dimwitted and forgetful, I panic inside. It could be from the lupus. It could be a warning sign I'm getting early-onset Alzheimer's. Either way, I can't stop it, so I haven't bothered to have anyone check. Last time I asked a doctor to see what she could find out, I was told I was making up the forgetfulness because "young people don't forget things." Hard to argue with illogic like that. (No, I don't see that doctor anymore.) I do what I can with nutrition, vitamins and minerals, and activities that have proven to help stave of Alzheimer's-like activity in the brain, such as knitting (and you thought I just did it because I have a yarn fetish).
Lupus, Sjogren's Syndrome, Raynaud's Syndrome -- these they know I have. Yes, I have the Family Value Pack of rheumatoid autoimmune diseases. It's actually not that unusual; it's referred to as overlapping. I have good days and bad days, but even my good days aren't "good" compared to a healthy person of my age. I don't even have to get these other diseases that run in my family to be sick. I'm sick every single day. I have been since I was 12 years old, when I first manifested severe gastric problems that have been traced to the beginnings of all three of the above diseases; I lost months of school. All of these diseases are carried chromosomally and a predisposition is inherited.
How can stem cell research help with lupus? It has already in the UK, and as of this year, that stem-cell-research-begotten drug, Rituxin, was approved by the U.S.'s FDA for treatment of lupus (it was previously approved as a cancer treatment). It is a genetically-engineered monoclonal antibody that targets a receptor called CD20, found on some B cells. The antibody marks the B cells for destruction by the immune system, after which new B cells are generated by stem cells. These new B cells are immune (pardon the pun) from destruction from the lupus-compromised immune system, however. You'd think something like this would have been developed sooner and approved sooner in the U.S. Guess again -- it involved embryonic stem cell research. Unfortunately, one has to have cycled through any number of other damaging drugs used in lupus treatment first to qualify to take Rituxin. I have to get sicker, and get sicker from taking more damaging drugs, before I can try this new drug. Such is life in the fast lane. (Seriously, I'm glad I'm not sick enough to qualify for it.)
But back to the question at hand.
MS, lupus, Alzheimer's (especially early-onset, which is distinctly different) -- all have hope from stem cell research.
Denying me hope is one of the cruellest personal "triumphs" this current American political administration has held over me.
This isn't about TV personalities. This isn't about political ads for or against. This isn't about whether or not certain uber-conservative radio personalities are or are not nutters. This is about hope for millions of people throughout the U.S. who have or will develop diseases that could be treated with drugs developed due to stem cell research. You will be very unusual if you do not know, or will sometime in your life, someone who is affected.
In fact, you do know someone: me.
This isn't just about Michael J. Fox. This is about my life.
But for me this is personal. It's not just about Michael J. Fox. It's not about people in TV commercials. This is me. This is my life they're playing with. It is the lives (I should say, was the lives) of close family members.
It was the life of my mother, who took her own life at the age of 52 rather than continue to "live" (and I use that word in quotes deliberately) with sudden adult-onset MS, which was ravaging her body and her mind to the extent that she was visibly worsening by the day. She had no "good days" left -- not for years, by that point. Sudden adult-onset MS is not necessarily inheritable, in that it doesn't necessarily become inherited as a full-blown disease. But it is genetic, as the predisposition is carried chromosomally.
It was the life of my aunt Vivian, my father's dearest sister, who died of a rare form of Alzheimer's, early-onset Alzheimer's, which is definitely inherited. As far as we can tell (as they didn't used to diagonose the early-onset variety in years past, as they didn't know why some younger people developed what they used to call "dementia"), at least one in every generation of that side of my family get early-onset Alzheimer's. This led to my own decision not to have children (would you, with MS, lupus, and this nastiest of demons all running in your DNA?), but didn't stop my half-brother, who has a goodly clan of children -- I hope none of them develop it, but I don't hold out hope. I don't know which of us in this generation will develop it. Personally, every year I get more dimwitted and forgetful, I panic inside. It could be from the lupus. It could be a warning sign I'm getting early-onset Alzheimer's. Either way, I can't stop it, so I haven't bothered to have anyone check. Last time I asked a doctor to see what she could find out, I was told I was making up the forgetfulness because "young people don't forget things." Hard to argue with illogic like that. (No, I don't see that doctor anymore.) I do what I can with nutrition, vitamins and minerals, and activities that have proven to help stave of Alzheimer's-like activity in the brain, such as knitting (and you thought I just did it because I have a yarn fetish).
Lupus, Sjogren's Syndrome, Raynaud's Syndrome -- these they know I have. Yes, I have the Family Value Pack of rheumatoid autoimmune diseases. It's actually not that unusual; it's referred to as overlapping. I have good days and bad days, but even my good days aren't "good" compared to a healthy person of my age. I don't even have to get these other diseases that run in my family to be sick. I'm sick every single day. I have been since I was 12 years old, when I first manifested severe gastric problems that have been traced to the beginnings of all three of the above diseases; I lost months of school. All of these diseases are carried chromosomally and a predisposition is inherited.
How can stem cell research help with lupus? It has already in the UK, and as of this year, that stem-cell-research-begotten drug, Rituxin, was approved by the U.S.'s FDA for treatment of lupus (it was previously approved as a cancer treatment). It is a genetically-engineered monoclonal antibody that targets a receptor called CD20, found on some B cells. The antibody marks the B cells for destruction by the immune system, after which new B cells are generated by stem cells. These new B cells are immune (pardon the pun) from destruction from the lupus-compromised immune system, however. You'd think something like this would have been developed sooner and approved sooner in the U.S. Guess again -- it involved embryonic stem cell research. Unfortunately, one has to have cycled through any number of other damaging drugs used in lupus treatment first to qualify to take Rituxin. I have to get sicker, and get sicker from taking more damaging drugs, before I can try this new drug. Such is life in the fast lane. (Seriously, I'm glad I'm not sick enough to qualify for it.)
But back to the question at hand.
MS, lupus, Alzheimer's (especially early-onset, which is distinctly different) -- all have hope from stem cell research.
Denying me hope is one of the cruellest personal "triumphs" this current American political administration has held over me.
This isn't about TV personalities. This isn't about political ads for or against. This isn't about whether or not certain uber-conservative radio personalities are or are not nutters. This is about hope for millions of people throughout the U.S. who have or will develop diseases that could be treated with drugs developed due to stem cell research. You will be very unusual if you do not know, or will sometime in your life, someone who is affected.
In fact, you do know someone: me.
This isn't just about Michael J. Fox. This is about my life.