Making systems work is the great task of my generation of physicians and
scientists. But I would go further and say that making systems work —
whether in healthcare, education, climate change, making a pathway out
of poverty — is the great task of our generation as a whole.” (Atul Gawande)
This particular TED talk is one that speaks to the current crisis in medicine. We have cowboys and mavericks when we need pit crews that work together as a system. It's quite interesting and certainly worth the 20 minutes.
Showing posts with label TIL. Show all posts
Showing posts with label TIL. Show all posts
Friday, April 20, 2012
Monday, June 27, 2011
Genetics, Confusion, and Me
File this under TIL at the conference...
I went to several sessions discussing both Severe Combined Immune Deficiency and genetics but I really didn't think I would have the same kind of revelations I have had.
At the last conference, I learned that my having a primary immune deficiency isn't quite as random as I'd been led to believe. My grandfather passed away from complications resulting from Scleroderma, an autoimmune disease. My father has B12 neuropathy, more than likely related to an autoimmune dysfunction. These are connected in an interesting way. They all are connected via the T-helper cells and are basically sides of the same coin. It was as though a light went on in my head and I finally understood.
I found out through further research that my grandfather's family had a history of such diseases. My great grandmother wrote of symptoms that sounded like autoimmune problems in her letters to my grandfather. Also, such autoimmune conditions are more common among the Amish. My grandfather left the Amish and took the gene malfunctions with him.
Sitting in several genetics lessons, I had been told several times that CVID is not really connected to any particular gene. There are several that are related, the TACI gene being the most recently discovered one, but there is no clear path for genetic testing.
Then I went to a genetic counseling session. One of the mothers in the session pulled me aside after to tell me that the RAG dysfunction genes run in the Amish and have been shown to relate to B Cell disregulation, similar to what happened in my family with the autoimmune problems and my PIDD. It has specifically tied to SCID.
Uh. What? The next step will be to discuss this stuff with my immunologist at my next appointment. I am not terribly sure about how I feel with this stuff. I am going to have my T cell function checked. There is a distinct possibility that I could actually have a SCID variant rather than CVID. Wouldn't that be interesting?
Importantly, though, is the information this gives me and the genetic testing possibilities for my siblings and cousins. There is the chance that they could pass such a dysfunction on to their children. We'll have to trace it up and out to figure that out, but it certainly concerns me for my future children. It's a tough thing to learn, but would be a good thing to know.
I went to several sessions discussing both Severe Combined Immune Deficiency and genetics but I really didn't think I would have the same kind of revelations I have had.
At the last conference, I learned that my having a primary immune deficiency isn't quite as random as I'd been led to believe. My grandfather passed away from complications resulting from Scleroderma, an autoimmune disease. My father has B12 neuropathy, more than likely related to an autoimmune dysfunction. These are connected in an interesting way. They all are connected via the T-helper cells and are basically sides of the same coin. It was as though a light went on in my head and I finally understood.
I found out through further research that my grandfather's family had a history of such diseases. My great grandmother wrote of symptoms that sounded like autoimmune problems in her letters to my grandfather. Also, such autoimmune conditions are more common among the Amish. My grandfather left the Amish and took the gene malfunctions with him.
Sitting in several genetics lessons, I had been told several times that CVID is not really connected to any particular gene. There are several that are related, the TACI gene being the most recently discovered one, but there is no clear path for genetic testing.
Then I went to a genetic counseling session. One of the mothers in the session pulled me aside after to tell me that the RAG dysfunction genes run in the Amish and have been shown to relate to B Cell disregulation, similar to what happened in my family with the autoimmune problems and my PIDD. It has specifically tied to SCID.
Uh. What? The next step will be to discuss this stuff with my immunologist at my next appointment. I am not terribly sure about how I feel with this stuff. I am going to have my T cell function checked. There is a distinct possibility that I could actually have a SCID variant rather than CVID. Wouldn't that be interesting?
Importantly, though, is the information this gives me and the genetic testing possibilities for my siblings and cousins. There is the chance that they could pass such a dysfunction on to their children. We'll have to trace it up and out to figure that out, but it certainly concerns me for my future children. It's a tough thing to learn, but would be a good thing to know.
Monday, June 13, 2011
No More Salad Bars...
I went to a wedding this past weekend of a lovely sorority sister of mine. I did something I shouldn't have. I ate from the salad portion of the buffet.
Why is that such a bad thing? If lettuce and other veggies are not held at a cold enough temperature bacteria start to grow. It takes a lot of this bacteria to hurt most people, but as you know, dear reader, I am not a normal person. I have found that cucumbers and tomatoes are special culprits of this, but I've had problems with almost every raw veggie you'd see on a salad bar, so I usually shy away. This salad looked so tasty and I'm trying to eat more veggies... I think you can see where this is going...
It's gotten to the point where I fear eating at buffets and plan such that I can be sure to be near a familiar or private bathroom if I'm going to eat at one. I also have to be careful to make sure to avoid it entirely if I'll be in a car. I can't even eat at Subway anymore. I have found that their subs make me ill because of the veggies. Of course, I could get something with no veggies, but I always think "it will be ok this time" and eat the veggies and WHOA WITH THE REGRET!
So, in short, if you're serving salad to immune compromised or deficient people, please keep it very cold after cutting it. Thank you in advance.
Why is that such a bad thing? If lettuce and other veggies are not held at a cold enough temperature bacteria start to grow. It takes a lot of this bacteria to hurt most people, but as you know, dear reader, I am not a normal person. I have found that cucumbers and tomatoes are special culprits of this, but I've had problems with almost every raw veggie you'd see on a salad bar, so I usually shy away. This salad looked so tasty and I'm trying to eat more veggies... I think you can see where this is going...
It's gotten to the point where I fear eating at buffets and plan such that I can be sure to be near a familiar or private bathroom if I'm going to eat at one. I also have to be careful to make sure to avoid it entirely if I'll be in a car. I can't even eat at Subway anymore. I have found that their subs make me ill because of the veggies. Of course, I could get something with no veggies, but I always think "it will be ok this time" and eat the veggies and WHOA WITH THE REGRET!
So, in short, if you're serving salad to immune compromised or deficient people, please keep it very cold after cutting it. Thank you in advance.
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