Depressing Health Shit
I was asked to write a little bit about leukemia and how it affects kids with Down syndrome and why we DS parents are always a little paranoid and perhaps a bit on the hypochrondriac side of sane.
Children with Down syndrome are much more likely to develop childhood leukemia. The number I have in my head is about 1 in 100. I know several kids through my online support networks that are currently being treated for leukemia. It is, understandably, the terror of every DS parent.
We are told to test our kids' blood every six months, doing a CBC (complete blood count), to see where their platelets are. I will tell you that Kelly hasn't had a normal blood test in his life, and he's had 7 in his short 21 months. These kids have some wonky blood. We are also told to be on the look out for signs and symptoms of leukemia: bruises and petechaie (a rash that does not blanch), lethargy, loss of appetite, lowered immunity. I was also told that leukemia is not a silent disease, that most likely I will know something is wrong before tests reveal the problem.
That doesn't mean I won't freak the fuck right out when my baby wakes up from a nap covered in petechaie or when he is sick for 6 straight weeks. Hence the reason he has had 7 CBCs in less than 2 years.
There are two types of leukemia that our kids are usually diagnosed with: Acute Myeloid Leukemia (AML) and Acute Lymphoblastic Leukemia (ALL). The diagnoses are about half and half, depending on what literature you look at. Children with DS tend to develop AML prior to age four and ALL on average between the ages of 3 and 4. Statistically, childhood leukemia has about a 50% cure rate across the board, but children with DS tend to respond to treatments much better and faster than their typical counterparts. The cure rate for AML is about 85% for kids with Down syndrome. I've read varying things about ALL, but it looks to be close to the statistical average of 50%.
Science is not quite sure the exact reason that they develop leukemia more often nor why they are more easily cured, but they think it has to do with the mutation of a specific protein unique to T21. The mutation not only causes the cancer, but makes it curable. The key, of course, is to figure out how to unlock the secrets of the cure and to turn off the trigger that is the cause.
There are other things we all live in fear of as well. Infantile spasms which affect about 10% of all children with Down syndrome. Hypothyroidism which is seen in about 40% of people with Down syndrome. Alzheimer's disease which, by the time people with DS hit 60 years of age, has stricken about 95% of the population.
But, again, there are a number of common ailments that the triplicated chromosome number 21 seems to protect them from. Sold mass malignancies and acquired cardiovascular disease, for example, are much rarer in people with Down syndrome.
It's really a fascinating thing, genetics. I only wish that they would put more funding toward Down syndrome. If we can unlock the key of that chromosome, we might be able to figure out a lot of diseases and how to prevent them, rather than cure them.
But, with prenatal testing and high termination rates, we may eliminate people like Kelly before we can fully figure out the secrets.
Alas, that is for another post.
Children with Down syndrome are much more likely to develop childhood leukemia. The number I have in my head is about 1 in 100. I know several kids through my online support networks that are currently being treated for leukemia. It is, understandably, the terror of every DS parent.
We are told to test our kids' blood every six months, doing a CBC (complete blood count), to see where their platelets are. I will tell you that Kelly hasn't had a normal blood test in his life, and he's had 7 in his short 21 months. These kids have some wonky blood. We are also told to be on the look out for signs and symptoms of leukemia: bruises and petechaie (a rash that does not blanch), lethargy, loss of appetite, lowered immunity. I was also told that leukemia is not a silent disease, that most likely I will know something is wrong before tests reveal the problem.
That doesn't mean I won't freak the fuck right out when my baby wakes up from a nap covered in petechaie or when he is sick for 6 straight weeks. Hence the reason he has had 7 CBCs in less than 2 years.
There are two types of leukemia that our kids are usually diagnosed with: Acute Myeloid Leukemia (AML) and Acute Lymphoblastic Leukemia (ALL). The diagnoses are about half and half, depending on what literature you look at. Children with DS tend to develop AML prior to age four and ALL on average between the ages of 3 and 4. Statistically, childhood leukemia has about a 50% cure rate across the board, but children with DS tend to respond to treatments much better and faster than their typical counterparts. The cure rate for AML is about 85% for kids with Down syndrome. I've read varying things about ALL, but it looks to be close to the statistical average of 50%.
Science is not quite sure the exact reason that they develop leukemia more often nor why they are more easily cured, but they think it has to do with the mutation of a specific protein unique to T21. The mutation not only causes the cancer, but makes it curable. The key, of course, is to figure out how to unlock the secrets of the cure and to turn off the trigger that is the cause.
There are other things we all live in fear of as well. Infantile spasms which affect about 10% of all children with Down syndrome. Hypothyroidism which is seen in about 40% of people with Down syndrome. Alzheimer's disease which, by the time people with DS hit 60 years of age, has stricken about 95% of the population.
But, again, there are a number of common ailments that the triplicated chromosome number 21 seems to protect them from. Sold mass malignancies and acquired cardiovascular disease, for example, are much rarer in people with Down syndrome.
It's really a fascinating thing, genetics. I only wish that they would put more funding toward Down syndrome. If we can unlock the key of that chromosome, we might be able to figure out a lot of diseases and how to prevent them, rather than cure them.
But, with prenatal testing and high termination rates, we may eliminate people like Kelly before we can fully figure out the secrets.
Alas, that is for another post.
posted by The Histrionics of a Fat Housewife at 9:57 PM
0 Comments:
Post a Comment
<< Home