In the name of research blog posts, writing essays, or just finding interesting information for myself, I often conduct very unusual Google searches. And despite extensive use of "", +, -, and advanced search options, I am left paging through hundreds of hits that do not feature the type of content that I want. For community service projects that I participate in, I am often searching for person stories of those affected by bone marrow failure diseases, as I was as a child, but I end up with every hospital int he country's description of the diseases. For one paper in college, I researched the feud between Percival Lowell and the lead astronomer at Harvard in the early 1900s, but my Google search returned every academic article on astronomy in that era, because they were contemporaries.
In my ideal world, there would be a tool that would allow me to describe the type of sources I am looking for, and would generate corresponding results. Similarly to the way that Siri can search your immediate area to find restaurants that are still open and serve the exact dish you're looking for, this search engine would be able to find the personal blogs and updates of families dealing with serious illness, or the actual insults that early 20th century astronomers hurled at each other from the pages of scientific journals. I hope that one day I will be able to type/tell my search engine "I need writings from Percival Lowell insulting the location of the University of Chicago's observatory" and I will be given the editorial Lowell wrote doing that very thing. Or, I might ask for "the blogs of young adults who have survived bone marrow transplants" and be taken to a selection of potential new connections. Given the major advances in technology that have made Siri and all that the IPhone 4 can do possible, I have high hopes that descriptive search might be available in the not-too-distant future.
This scholarship is sponsored by ATTSavings.com
Sunday, July 1, 2012
Saturday, June 30, 2012
America's Best Blogging: Who Has Your Vote?
This November, I will be voting for President Barack Obama. There are a lot of reasons for this. I agree with many of his policies and feel that he has done a good job of handling the many, varied, and considerable problems our country faces.
But being only 21, and in college, his policies on public education, defense, and energy don't affect me that much. There is one intensely personal reason that I will be voting for Obama come November, and it can be stated in three letters: ACA.
The Affordable Care Act is the Obama Administration's landmark health insurance and care reform law. Health care reform has a long, difficult, and fascinating history in the United States (anyone interested in this topic should read Paul Starr's incredible book, Remedy and Reaction: The Peculiar American Struggle over Health Care Reform). Due to wage limits imposed during World War II, companies began offering benefits packages to employees, which started the US down the road to the private, employer-sponsored system we have today. This system works well for anyone who has a full-time job with a large corporation, and no major health concerns. It doesn't work for the working poor, the disabled, the self-employed or those who work for small companies, or anyone who is very sick. As a result, millions of Americans are without health insurance. However, a plurality of monied Americans have health care, so there was little political will for reform.
President Obama and his administration moved forward with the ACA despite the lack of political will, and despite heavy opposition from many members of Congress, and some members of the American public. They fought incorrect information and partisan fights to pass the largest overhaul of the health care system in American history.
Several key provisions of the bill include: allowing young people to stay on their parent's health insurance until they are 26 years old, and banning insurers from putting a lifetime cap on care or denying coverage to those with preexisting conditions.
And that's where I--and my vote for Obama--come in. President Obama has vowed to stand behind this law, and his administration saw it through a tumultuous challenge in the Supreme Court. Just this week, the Court upheld the law, and its provisions will continue to come into effect in future years. Mitt Romney has vowed to repeal the law. And despite the fact that I am an ostensibly healthy 21-year-old, I have an incredibly personal stake in the ACA's existence.
In January of 1996, when I was four, I was diagnosed with a very rare bone marrow failure syndrome called aplastic anemia. Bone marrow produces blood cells, and in aplastic anemia, for reasons that are still unknown, it fails to produce them in sufficient numbers. I almost bled to death from a nosebleed because I could not clot properly, I had many infections that could have become life-threatening because I did not have enough white blood cells to fight them off, and I was pale, cold and tired due to lack of red blood cells to circulate oxygen.
After exhausting the various drug therapies available, and spending more than a year dependent on weekly blood transfusions to live, I received a bone marrow transplant in June 2001. After a year of recovery, I was pronounced cured.
But the bone marrow transplant required me to receive extremely high doses of chemotherapy, and the variety of medications I was on before, during, and after my transplant can have long-term side effects. Bone marrow transplant for aplastic anemia is a relatively new procedure, all things considered, the first being performed in 1971. So, while my life expectancy is now that of a normal person's, it is not well known what long-term effects I will face.
To that end, I make yearly trips to a specialized clinic in New York City at the Memorial Sloan-Kettering Cancer Center, where I had my transplant. This clinic is designed to follow adults who had cancer or hematological diseases as children for the rest of their lives, to deal with the specialized needs they have.
Every year, I have blood work done to ensure that my bone marrow is still healthy, I am checked for hormone levels and thyroid function. Every few years, I received a bone density scan, because I am at risk for early osteoporosis. My heart and lungs are monitored, and I see an outside opthamologist to monitor the cataracts I developed as a result of medications I received. So far, they are small enough to not affect my vision, and they will hopefully stay that way.
As you might imagine, none of this is inexpensive. I am incredibly fortunate that my parents have had excellent health insurance throughout my life. And, thanks to the ACA, I will be able to continue to have this insurance until I am 26. In order to afford all the care that I need, I absolutely have to have health insurance.
If the ACA is repealed, I will need to find health insurance as soon as I get out of college. This will mean putting many of my dreams on the back burner: graduate school, work for a non profit, teaching in a foreign country. I will get a job with a large corporation that offers health insurance, and I will then have to hope that the company agrees to take me on, doesn't charge premiums that I cannot afford as a new member of the workforce, and does not put a life time cap on my insurance or deny me aspects of my treatment.
I did not ask to get aplastic anemia. Nothing I or my parents did caused this. It happened, and we dealt with it in the only way we could. The treatment that kept me alive has made my medical care more complicated, but receiving this care could be a matter of life and death. Before there was long-term care, survivors sometimes died or were disabled by preventable conditions resulting from their treatment.
This issue has been in the spotlight recently with Good Morning America anchor Robin Robert's announcement that she has Myelodysplasia as a result of her treatment for breast cancer. She has access to excellent care, and is slated to undergo a bone marrow transplant. She has an excellent prognosis because she has health insurance. All I want is the same opportunity to take care of myself in the ways I need to in order to stay healthy.
I know I am incredibly fortunate to have received a second chance at life, and I intend to protect my life and my health in any way that I can. With President Obama and the Affordable Care Act, I will be able to do that without having to worry, put aside my dreams, or go into extensive debt. On November 6th, I will be voting for President Obama so that I have a chance to live a healthy, worry-free, and full future.
by YourLocalSecurity.com
But being only 21, and in college, his policies on public education, defense, and energy don't affect me that much. There is one intensely personal reason that I will be voting for Obama come November, and it can be stated in three letters: ACA.
The Affordable Care Act is the Obama Administration's landmark health insurance and care reform law. Health care reform has a long, difficult, and fascinating history in the United States (anyone interested in this topic should read Paul Starr's incredible book, Remedy and Reaction: The Peculiar American Struggle over Health Care Reform). Due to wage limits imposed during World War II, companies began offering benefits packages to employees, which started the US down the road to the private, employer-sponsored system we have today. This system works well for anyone who has a full-time job with a large corporation, and no major health concerns. It doesn't work for the working poor, the disabled, the self-employed or those who work for small companies, or anyone who is very sick. As a result, millions of Americans are without health insurance. However, a plurality of monied Americans have health care, so there was little political will for reform.
President Obama and his administration moved forward with the ACA despite the lack of political will, and despite heavy opposition from many members of Congress, and some members of the American public. They fought incorrect information and partisan fights to pass the largest overhaul of the health care system in American history.
Several key provisions of the bill include: allowing young people to stay on their parent's health insurance until they are 26 years old, and banning insurers from putting a lifetime cap on care or denying coverage to those with preexisting conditions.
And that's where I--and my vote for Obama--come in. President Obama has vowed to stand behind this law, and his administration saw it through a tumultuous challenge in the Supreme Court. Just this week, the Court upheld the law, and its provisions will continue to come into effect in future years. Mitt Romney has vowed to repeal the law. And despite the fact that I am an ostensibly healthy 21-year-old, I have an incredibly personal stake in the ACA's existence.
 |
| Me! |
In January of 1996, when I was four, I was diagnosed with a very rare bone marrow failure syndrome called aplastic anemia. Bone marrow produces blood cells, and in aplastic anemia, for reasons that are still unknown, it fails to produce them in sufficient numbers. I almost bled to death from a nosebleed because I could not clot properly, I had many infections that could have become life-threatening because I did not have enough white blood cells to fight them off, and I was pale, cold and tired due to lack of red blood cells to circulate oxygen.
 |
| What normal bone marrow looks like (from Harvard Proteomic Engineering) |
 |
| What my bone marrow looked like (from Journal of Pathology) |
After exhausting the various drug therapies available, and spending more than a year dependent on weekly blood transfusions to live, I received a bone marrow transplant in June 2001. After a year of recovery, I was pronounced cured.
 |
| In the hospital for transplant |
 |
| A year after transplant, at summer camp! |
But the bone marrow transplant required me to receive extremely high doses of chemotherapy, and the variety of medications I was on before, during, and after my transplant can have long-term side effects. Bone marrow transplant for aplastic anemia is a relatively new procedure, all things considered, the first being performed in 1971. So, while my life expectancy is now that of a normal person's, it is not well known what long-term effects I will face.
To that end, I make yearly trips to a specialized clinic in New York City at the Memorial Sloan-Kettering Cancer Center, where I had my transplant. This clinic is designed to follow adults who had cancer or hematological diseases as children for the rest of their lives, to deal with the specialized needs they have.
Every year, I have blood work done to ensure that my bone marrow is still healthy, I am checked for hormone levels and thyroid function. Every few years, I received a bone density scan, because I am at risk for early osteoporosis. My heart and lungs are monitored, and I see an outside opthamologist to monitor the cataracts I developed as a result of medications I received. So far, they are small enough to not affect my vision, and they will hopefully stay that way.
As you might imagine, none of this is inexpensive. I am incredibly fortunate that my parents have had excellent health insurance throughout my life. And, thanks to the ACA, I will be able to continue to have this insurance until I am 26. In order to afford all the care that I need, I absolutely have to have health insurance.
If the ACA is repealed, I will need to find health insurance as soon as I get out of college. This will mean putting many of my dreams on the back burner: graduate school, work for a non profit, teaching in a foreign country. I will get a job with a large corporation that offers health insurance, and I will then have to hope that the company agrees to take me on, doesn't charge premiums that I cannot afford as a new member of the workforce, and does not put a life time cap on my insurance or deny me aspects of my treatment.
I did not ask to get aplastic anemia. Nothing I or my parents did caused this. It happened, and we dealt with it in the only way we could. The treatment that kept me alive has made my medical care more complicated, but receiving this care could be a matter of life and death. Before there was long-term care, survivors sometimes died or were disabled by preventable conditions resulting from their treatment.
This issue has been in the spotlight recently with Good Morning America anchor Robin Robert's announcement that she has Myelodysplasia as a result of her treatment for breast cancer. She has access to excellent care, and is slated to undergo a bone marrow transplant. She has an excellent prognosis because she has health insurance. All I want is the same opportunity to take care of myself in the ways I need to in order to stay healthy.
I know I am incredibly fortunate to have received a second chance at life, and I intend to protect my life and my health in any way that I can. With President Obama and the Affordable Care Act, I will be able to do that without having to worry, put aside my dreams, or go into extensive debt. On November 6th, I will be voting for President Obama so that I have a chance to live a healthy, worry-free, and full future.
by YourLocalSecurity.com
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