Four-year-old Devan Tatlow’s struggle with leukemia has caused quite a stir on the Internet, prompting celebs like Paris Hilton and Kim Kardashian to encourage people to donate their bone marrow. Dr. Jon LaPook talks with Devan’s family about their search for a match.
Imagine throwing a lifesaving treatment in the garbage. That’s exactly what happens in the United States over ten thousand times a day because we do not routinely offer to collect precious umbilical cord blood at the time of birth. Thousands of Americans — many of them children — needlessly die annually because they cannot find either a bone marrow or umbilical cord blood match to help treat conditions like lymphoma and leukemia. Yet umbilical blood is discarded as medical waste in the vast majority of the more than four million births occurring each year. Read more »
Mr. Ron Murray, a tranplant heart recipient, tells his story:
From the video:
“If the transplant issue ever comes up for anyone listening, that’s almost the first thing they would think, too. If I had time to think about it over that year, I would have realized ‘Oh, my God.’ I would have apprehension all built up about how I would react to…I mean is it going to change my way of thinking? Is it going to alter my own thoughts? None of that holds up, ultimately.
When I realized that there was going to be forever an emotional component, and maybe a spiritual component to this thing that I hadn’t thought about, is when I became –- God, I don’t even know if I can tell you about it –- that I began to grieve for the donor, that brought me to tears several of those nights.Read more »
*This blog post was originally published at Dr. Wes*
We live in a society obsessed with outside beauty, so it’s no wonder that parents whose children are born with any imperfection worry endlessly about how their child will be accepted in society.
As parents, though, our job is to make sure our kids see themselves as much more than whatever obstacles are tossed their way, as tough as that may be.
Adam and Donna Bell felt that anguish first hand in 2005 when their son Ethan was born with cleft lip and palate. Ethan now has an adorable smile and hardly a scar at all thanks to the amazingly talented doctors at the NYU Institute of Reconstructive Plastic Surgery.
Wanting to do more to raise awareness about the nearly 1 in 600 infants born with cleft (opening) lip or palate each year, the Bell’s founded Smiley Faces Foundation, a nonprofit who strives to not only assist the Institute of Reconstructive Plastic Surgery at NYU Langone Medical Center, but also help provide treatment for all children who need cleft lip and palate repair in the United States. Read more »
*This blog post was originally published at Dr. Gwenn Is In*
I was diagnosed with type 1 diabetes just before I started second grade, back in 1986. I played with Barbie dolls, colored countless coloring books with my box of Crayola 96 (sharpener in the back), and sported a messy ponytail as often as my mom would allow.
But my life also included dozens of plastic bags filled with orange-capped syringes. And black meter cases that zipped up the side and held my glucose meter. And small vials of bandaid-scented insulin. My childhood was colorful and fun and just like every other kids’, but there were some dreary bits of diabetes management as a running thread.
I wish there had been things like this to hold my meter in when I was growing up with type 1 – because these meter cases are awesome:
This meter case was created by Kyrra Richards, who was diagnosed with type 1 diabetes in 2007. I think it is GORGEOUS. After her diagnosis, Kyrra created Myabetic – a specialty store stocked with playful and cool glucose meter cases. She sent me a few of her meter cases to review here on SUM, and she also offered to share a little bit of her story. Read more »
*This blog post was originally published at Six Until Me.*
In honor of World Rare Disease day and the Global Genes Project, I’d like to repost a fascinating interview with a young man who has hemophilia…
Hemophilia A is a blood clotting disorder sometimes referred to as the “disease of kings” since it is a genetically inherited (X-linked) bleeding disorder that was introduced by Queen Victoria to the Russian royal family in the mid 1800’s. Women are carriers of the gene, while males express the signs of the disease, so only the “kings” display the trait.
Today there are fewer than 18,000 individuals with hemophilia A in the United States. Those with the most severe form of the disease make less than 1% of the regular amount of a certain blood clotting glycoprotein (known as factor VIII) and are often dependent on the regular intravenous administration of this expensive factor to keep them from bleeding to death. The cost of factor VIII and associated medical care and hospitalizations is estimated at $150,000/year.
How do people with hemophilia A manage to get their medical needs met in our current healthcare system? I spoke with a young man with hemophilia A (we’ll call him “J”) to find out. Read more »
It’s no secret that doctors are disappointed with the way that the U.S. healthcare system is evolving. Most feel helpless about improving their work conditions or solving technical problems in patient care. Fortunately one young medical student was undeterred by the mountain of disappointment carried by his senior clinician mentors…
I am proud to be a part of the American Resident Project an initiative that promotes the writing of medical students residents and new physicians as they explore ideas for transforming American health care delivery. I recently had the opportunity to interview three of the writing fellows about how to…
I m often asked to do book reviews on my blog and I rarely agree to them. This is because it takes me a long time to read a book and then if I don t enjoy it I figure the author would rather me remain silent than publish my…
When I was in medical school I read Samuel Shem s House Of God as a right of passage. At the time I found it to be a cynical yet eerily accurate portrayal of the underbelly of academic medicine. I gained comfort from its gallows humor and it made me…
I am hesitant to review diet books because they are so often a tangled mess of fact and fiction. Teasing out their truth from falsehood is about as exhausting as delousing a long-haired elementary school student. However after being approached by the authors’ PR agency with the promise of a…
We live in a society obsessed with outside beauty, so it’s no wonder that parents whose children are born with any imperfection worry endlessly about how their child will be accepted in society.
I was diagnosed with type 1 diabetes just before I started second grade, back in 1986. I played with Barbie dolls, colored countless coloring books with my box of Crayola 96 (sharpener in the back), and sported a messy ponytail as often as my mom would allow. 
