Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 In a message dated 99-09-20 22:50:44 EDT, you write: << Where are the major centers children are treated for mitochondrial disorders? >> My son Orion was treated at the Barnett Center, in Philadelphia, PA. Orion's Mommy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 Hi to all, I am the parent of a child diagnosed with mitochondrial disease just a few weeks after his birth. He developed severe heart failure, kidney failure, and liver failure at 10 days old. After a muscle biopsy, we were told he had a Complex III deficiency that probably contributed to his problems. He was put on a variety of heart medications and the usual mito vitamins. Today his is almost 3, and doing very well. He will be having eye surgery (both eyes) in a couple of weeks and gets speech therapy, but otherwise he is in good shape. His heart function is close to normal while on his meds. But I'm not posting today just as a parent--I'm writing as an author considering working on a widely accessible, easily understandable, and informational book about these disorders. I have proposed this book to a publishing house that specializes in " patient centered guides, " books that take on diseases or illnesses that are perhaps less widely known or understood, that people cannot easily learn about through other publications. They also seek disorders where the patients or families are very active in learning or networking, as I know mitochondrial-disease parents can be. This editor is mildly interested, but has several questions before we go further with the proposal. Most of these are marketing related--it's a business, after all. I feel strongly that this is an area where more and more people will want to learn about it as years go by. I've asked these questions of the UMDF but they just told me they'd mail me some info. If anyone on this list can help with compelling answers to some of these, I think the editor will agree. * How many children/individuals are diagnosed each year? Is this number growing? (Feel free to offer your take on why, anything you'd like to add) * Where are the major centers children are treated for mitochondrial disorders? How are their healthcare providers networked, that you know of? * How are parents networked--i.e., this discussion list... and are there other sites/chat rooms where we can find each other? Any idea how many people participate in this list or other groups? * What do you think the best title for the book would be? (mitochondrial disorders? mitochondrial diseases?) I'd welcome any other comments you have. Thanks for your input. My heart goes out to all mito parents. Warmly, Hilory Wagner npsbook@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 The University of California at San Diego has metabolic clinic for children with mito disorders. The Mitochondrial and Meatbolic Disease Center was established by Haas MD for Leighs syndrome. It was later expanded to include treatment, diagnosis and research for all mito disorders in both children and adults. Linna Huttman npsbook@... wrote: > > From: npsbook@... > > Hi to all, > > I am the parent of a child diagnosed with mitochondrial disease just a few weeks after his birth. He developed severe heart failure, kidney failure, and liver failure at 10 days old. After a muscle biopsy, we were told he had a Complex III deficiency that probably contributed to his problems. He was put on a variety of heart medications and the usual mito vitamins. > > Today his is almost 3, and doing very well. He will be having eye surgery (both eyes) in a couple of weeks and gets speech therapy, but otherwise he is in good shape. His heart function is close to normal while on his meds. > > But I'm not posting today just as a parent--I'm writing as an author considering working on a widely accessible, easily understandable, and informational book about these disorders. > > I have proposed this book to a publishing house that specializes in " patient centered guides, " books that take on diseases or illnesses that are perhaps less widely known or understood, that people cannot easily learn about through other publications. They also seek disorders where the patients or families are very active in learning or networking, as I know mitochondrial-disease parents can be. > > This editor is mildly interested, but has several questions before we go further with the proposal. Most of these are marketing related--it's a business, after all. I feel strongly that this is an area where more and more people will want to learn about it as years go by. > > I've asked these questions of the UMDF but they just told me they'd mail me some info. If anyone on this list can help with compelling answers to some of these, I think the editor will agree. > > * How many children/individuals are diagnosed each year? Is this number growing? (Feel free to offer your take on why, anything you'd like to add) > > * Where are the major centers children are treated for mitochondrial disorders? How are their healthcare providers networked, that you know of? > > * How are parents networked--i.e., this discussion list... and are there other sites/chat rooms where we can find each other? Any idea how many people participate in this list or other groups? > > * What do you think the best title for the book would be? (mitochondrial disorders? mitochondrial diseases?) > > I'd welcome any other comments you have. Thanks for your input. My heart goes out to all mito parents. > > Warmly, > > Hilory Wagner > npsbook@... > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 Dear HIlory, THREE CHEERS FOR YOU!! This is a much needed book and I'm sure would be received like a life-line to parents of newly diagnosed children. We would have loved to have something alnog the lines of what you preposed when we first found out. In answer to at least one of your questions, there are several chat sessions for mito families: Sunday and Wednesday nights, and just recently I was reading in here about another one being proposed for Europe. These are through the IMDN.org web site or the Massachustes General Hospital neurology forum. Also, I have found the bulletin boards on both of these sites to be chock-full of information. The major center on the West Coast is in San Diego through the University of Calif. @ San Diego. This is a critical area, as most on this list can attest, since finding a doctor/center who #1 knows what the heck a mito disorder is and #2 knows what to *do* about it are very rare indeed. Many of us have been through a considerable amount of pain and misery in our search for competent care. I know there are several other centers across the country....but am in brain-fade at the moment. someone help me out here!! Anyway, I say go for it, and will be willing to help in whatever way possible. GO TO IT!! ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 Dear HIlory, THREE CHEERS FOR YOU!! This is a much needed book and I'm sure would be received like a life-line to parents of newly diagnosed children. We would have loved to have something alnog the lines of what you preposed when we first found out. In answer to at least one of your questions, there are several chat sessions for mito families: Sunday and Wednesday nights, and just recently I was reading in here about another one being proposed for Europe. These are through the IMDN.org web site or the Massachustes General Hospital neurology forum. Also, I have found the bulletin boards on both of these sites to be chock-full of information. The major center on the West Coast is in San Diego through the University of Calif. @ San Diego. This is a critical area, as most on this list can attest, since finding a doctor/center who #1 knows what the heck a mito disorder is and #2 knows what to *do* about it are very rare indeed. Many of us have been through a considerable amount of pain and misery in our search for competent care. I know there are several other centers across the country....but am in brain-fade at the moment. someone help me out here!! Anyway, I say go for it, and will be willing to help in whatever way possible. GO TO IT!! ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 Dear HIlory, THREE CHEERS FOR YOU!! This is a much needed book and I'm sure would be received like a life-line to parents of newly diagnosed children. We would have loved to have something alnog the lines of what you preposed when we first found out. In answer to at least one of your questions, there are several chat sessions for mito families: Sunday and Wednesday nights, and just recently I was reading in here about another one being proposed for Europe. These are through the IMDN.org web site or the Massachustes General Hospital neurology forum. Also, I have found the bulletin boards on both of these sites to be chock-full of information. The major center on the West Coast is in San Diego through the University of Calif. @ San Diego. This is a critical area, as most on this list can attest, since finding a doctor/center who #1 knows what the heck a mito disorder is and #2 knows what to *do* about it are very rare indeed. Many of us have been through a considerable amount of pain and misery in our search for competent care. I know there are several other centers across the country....but am in brain-fade at the moment. someone help me out here!! Anyway, I say go for it, and will be willing to help in whatever way possible. GO TO IT!! ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 1999 Report Share Posted September 22, 1999 Hi Cheri, I appreciate your thoughts. Granted, the questions I posed were basic, but they were basically rephrased versions of my editor's inquiries, what she needs to know to determine the scope of the potential readership for the book. As a mito mom myself I am aware of the dearth of resources and knowledgeable professionals in this area. I know what it's like to have several pediatricians shrug their shoulders at my son. There was even one who demanded I provide her with background on the disease (rather than looking up a few journal articles on her own!). This book would not be specifically for clinicians or researchers on the cutting edge of the field, although it's my hope that those individuals would be willing to share their insights as I write. And I know I can't come close to addressing every question about every illness that comprises mitochondrial disorders as they affect every single individual differently. Rather, I hope to give parents who have no clue what mitochondrial disease is all about a good place to start their education. Point them to research centers, online resources, organizations that can supply background materials, and so on. Let people know they aren't alone--that's how I felt when I got the news about my son 3 years ago. It's a learning journey for everyone involved--I am hoping to at least give people a place to begin. Thanks again. Hilory << Date: Tue, 21 Sep 1999 13:59:50 EDT From: Cheri77777@... Subject: Re: info needed for mito book Are you going to get some help writing this book? I don't mean to sound critical, but some of these questions are very basic and if you don't know the answers, you will have a LOT of research ahead of you to insure accuracy. Do you have a physician with in-depth mito knowledge willing to read, critique, and insure the accuracy of what you are about to embark upon? Once more, I'm not trying to be critical, but mitochondrial disorders are complex at best even for the mito experienced physician. It was even posted of recent by another physician on this list that a very prominent mitochondrial doc said there was no complex one deficiency blood test, and guess what, there is!! If this particular doctor did not have that knowledge (the very prominent mito doc) then it lets one know that it really is hard for even the best intentioned and well knowledged physician to stay up on top all of the latest knowledge and research taking place within the realm of mitochondrial and related disease. Research is not happening fast enough, yet obviously there are not enough hours in the day nor enough times to collaborate info fast enough for everyone to stay on top of it all. And assuming that research info is not going to be a prime focus of your book, wow, you REALLY have your work cut out for you. Again, I'm not trying to be critical. I think your goals are good and I wish you success as such a book is needed, I just know that after intensive research on my own, the main thing I have learned is that the more you learn about metabolic disease in general, the more you realize there is for you to learn. Instead of emptying the pit of knowledge, I have uncovered a bottomless pit with no end of accumulative knowledge anywhere within sight. Even with intensive research on your own, you will be hard pressed to produce a book that covers all spectrum of mitochondrial disorders. I wish you luck. I'm just curious as to how you are planning on meeting such a worthwhile goal. If you do, be sure to let us all know about it. Cheri >> * How many children/individuals are diagnosed each year? Is this number >growing? (Feel free to offer your take on why, anything you'd like to add) >> >> * Where are the major centers children are treated for mitochondrial >disorders? How are their healthcare providers networked, that you know >of? >> >> * How are parents networked--i.e., this discussion list... and are there >other sites/chat rooms where we can find each other? Any idea how many >people participate in this list or other groups? >> >> * What do you think the best title for the book would be? (mitochondrial >disorders? mitochondrial diseases?) >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 1999 Report Share Posted September 22, 1999 >I hope to give parents who have no clue what mitochondrial disease is all >about a good place to start their education. Point them to research centers, >online resources, organizations that can supply background materials, and >so on. Let people know they aren't alone--that's how I felt when I got >the news about my son 3 years ago. > >It's a learning journey for everyone involved--I am hoping to at least >give people a place to begin. Sounds wonderful Hilory!!!! Do keep us up to date on it all! Cheri Quote Link to comment Share on other sites More sharing options...
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