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Endo in Boston - and a bit of rant.
by jspear, Jul 07, 2007 12:00AM
Does anyone know of an endo that actually is a diabetic in the Boston area?
I honestly feel no doctor can succssfully treat type I diabetes that also hasn't experienced the ups and downs (glucose levels and otherwise) that accompany the disease.
ALSO
Outside of my google sessions do any TI's know of any forums that aren't filled with "im not an expert but my child is diabetic"'s and one time xyz happend, because i can gaurantee your son or daughter will have at least a dozen stories they have never shared with anyone that you never knew about surrounding lows or highs that themselves or there friends helped them through.
j
I honestly feel no doctor can succssfully treat type I diabetes that also hasn't experienced the ups and downs (glucose levels and otherwise) that accompany the disease.
ALSO
Outside of my google sessions do any TI's know of any forums that aren't filled with "im not an expert but my child is diabetic"'s and one time xyz happend, because i can gaurantee your son or daughter will have at least a dozen stories they have never shared with anyone that you never knew about surrounding lows or highs that themselves or there friends helped them through.
j
Doctor's Answer
by JDRF-VOL-SG, Jul 07, 2007 12:00AM
I am a long-time type 1 diabetic (37 years) and I understand your frustration. I happen to have an identical twin who is also a type 1 diabetic, and it has helped me through the years to share experiences with her. I do have some suggestions for you, based on what your questions appear to be:
1. Recommendation of a Boston area endo — at this Forum, we are hosted by the Juvenile Diabetes Research Foundation (JDRF), and due to legal issues we absolutely cannot give recommendations for endos or hospitals on the Forum. (You can understand the issues if we recommend someone and they turn out to be horrible, and we then open ourselves up to lawsuit or bad reputation for suggesting the doctor). However, I think that if we can get you in touch with your own local chapter of the Juvenile Diabetes Research Foundation, you may be able to meet other type 1 individuals in your area who may be able to offer recommendations from personal experience. That way, you don't get a JDRF endorsement, but you do get personal reactions, which is I think what you really want. Read on for info on how to do this.
2. This second recommendation is going to take you to the same place as the first, but for different reasons. If I can put you in touch with the JDRF Online Diabetes Support Team, someone will be assigned to e-mail with you personally. And you can share experiences or ask questions with someone who lives with what you live with. It sounds to me as if this is what you are really looking for — someone who walks daily with the ups and downs of type 1 diabetes to share info with.
Now, here is how you do this. You go to the JDRF website at www.jdrf.org and click on the link on the left side of the page for the Online Diabetes Support Team. A window will show up that allows you to send in a request to this Support Team. Once you do so, your request will be forwarded to one of our large number of volunteers, and this person will respond to you within a couple of days. From then on, you and the responding volunteer can communicate directly through e-mail in a more personal way than this Forum.
Now as to your rant about comments about 'not being an expert, but being the parent of a type 1 diabetic child' — this disclaimer seems to have annoyed you for some reason, but you need to realize that we must make this kind of statement on any forum that is not managed by doctors because legal danger of appearing to diagnose problems online. NOBODY can diagnose a problem online, and we cannot take on the responsibility of perhaps offering inappropriate advice because we do not know the entire story. Perhaps the volunteers who write that particular disclaimer would be more accurate if writing instead, 'I am not a medical professional, but am the parent of a type 1 diabetic child.' I assure you that this experience as a parent is absolutely valuable to parents of newly diagnosed children, and our forum could not be as helpful to all if it was staffed only by adults who were type 1 themselves. We desperately need those parents of type 1 children to offer help to the parents who write in with questions.
But it seems that your best help is to get in touch with the Juvenile Diabetes Research Foundation and connect with other type 1 folks either through a local chapter or through one-on-one e-mail communication. We can help with that if you contact us.
P.S. I do agree with you that those of us who live as type 1 folks experience through the years many things that aren't written in the medical books. This is one reason I myself opt to spend time volunteering with JDRF, to share those experiences and what I have learned from them. In some ways, we DO become experts in time because of our experience. But this should never make a person take our advice over the advice of a medically-trained doctor.
1. Recommendation of a Boston area endo — at this Forum, we are hosted by the Juvenile Diabetes Research Foundation (JDRF), and due to legal issues we absolutely cannot give recommendations for endos or hospitals on the Forum. (You can understand the issues if we recommend someone and they turn out to be horrible, and we then open ourselves up to lawsuit or bad reputation for suggesting the doctor). However, I think that if we can get you in touch with your own local chapter of the Juvenile Diabetes Research Foundation, you may be able to meet other type 1 individuals in your area who may be able to offer recommendations from personal experience. That way, you don't get a JDRF endorsement, but you do get personal reactions, which is I think what you really want. Read on for info on how to do this.
2. This second recommendation is going to take you to the same place as the first, but for different reasons. If I can put you in touch with the JDRF Online Diabetes Support Team, someone will be assigned to e-mail with you personally. And you can share experiences or ask questions with someone who lives with what you live with. It sounds to me as if this is what you are really looking for — someone who walks daily with the ups and downs of type 1 diabetes to share info with.
Now, here is how you do this. You go to the JDRF website at www.jdrf.org and click on the link on the left side of the page for the Online Diabetes Support Team. A window will show up that allows you to send in a request to this Support Team. Once you do so, your request will be forwarded to one of our large number of volunteers, and this person will respond to you within a couple of days. From then on, you and the responding volunteer can communicate directly through e-mail in a more personal way than this Forum.
Now as to your rant about comments about 'not being an expert, but being the parent of a type 1 diabetic child' — this disclaimer seems to have annoyed you for some reason, but you need to realize that we must make this kind of statement on any forum that is not managed by doctors because legal danger of appearing to diagnose problems online. NOBODY can diagnose a problem online, and we cannot take on the responsibility of perhaps offering inappropriate advice because we do not know the entire story. Perhaps the volunteers who write that particular disclaimer would be more accurate if writing instead, 'I am not a medical professional, but am the parent of a type 1 diabetic child.' I assure you that this experience as a parent is absolutely valuable to parents of newly diagnosed children, and our forum could not be as helpful to all if it was staffed only by adults who were type 1 themselves. We desperately need those parents of type 1 children to offer help to the parents who write in with questions.
But it seems that your best help is to get in touch with the Juvenile Diabetes Research Foundation and connect with other type 1 folks either through a local chapter or through one-on-one e-mail communication. We can help with that if you contact us.
P.S. I do agree with you that those of us who live as type 1 folks experience through the years many things that aren't written in the medical books. This is one reason I myself opt to spend time volunteering with JDRF, to share those experiences and what I have learned from them. In some ways, we DO become experts in time because of our experience. But this should never make a person take our advice over the advice of a medically-trained doctor.
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I have been a type 1 for 34 years. I come to this site and several others .
Some of the other sites I go to are:
Diabetes healing well .com
And
Dr. Bernstein's Diabetes forum
I have found help and good advice at this site as well as the 2 I mentioned.
The 2 sites I mentioned seem to be run by diabetics or have diabetics as moderators, all 3 sites will give you some advice you can live with, but as with all free advice, sometimes it is worth what you pay for it.
Bob