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I'm working with a lady in the UK who has Proteus Syndrome -at least she presumes she does following a diagnosis from a specialist. However, everything gets confusing when you try to pin other medical people down to a second opinion. Does anyone have any experience of PS - or can anyone recommend a doctor / specialist we might contact. It doesn't have to be in the UK obviously - anywhere in the world would be good.
Thanks
Please can anyone help in identifying overgrowth experts in the USA?
It depends on the type of overgrowth you are speaking of. There is Proteus of course which is very rare and then there is Hemihypertrophy which is not as rare. I would be happy to talk more with you and see if I can help point you in the right direction. For Proteus Dr. Biesecker at the National Institute of Health is doing the research. There is also a web site at http://www.proteus-syndrome.org/ that has the clinical ddiagnosis info on their site.
If you are wondering if it's "Hemi" or not we have a great support group for that at http://health.groups.yahoo.com/group/hemihypertrophy/ . In closing I'll invite you to view our grand daughters web site as there are several pictures of her over growth throughout the site and she deals with both Proteus and Hemi.
Best Redards,
Ed Gallis
ednbec@gallisministries.com
Hi Ed
Many thanks for your reply. Much appreciated. We're researching on behalf of our friend mandy who lives in Manchester, England. She has met Dr Biesecker when he came to England a couple of years ago. He thought then that he had Proteus but Mandy's not 100% sure in her heart. we've tried to get to see Dr Biesecker when we come to the USA but he's not able to see us at this time. We're making a documentary for English TV which will tell Mandy's story and we're hoping to find some medical people in USa who would be willing to meet her and talk to us on camera about overgrowth in general and anything specifici which might come out of it.
Thanks for the link to your grand daughter's site. that's really helpful.
Best regards
Eamonn O'Neal
eamonn@centini.co.uk
We recently saw a program here in the States called "Can not stop growing" on the TLC channel and I believe we saw Mandy on that program. What an inspiration for us. We have a little different issue here with our grand daughters Proteus though. She was diagnoses with it while in The Netherlands by a team of doctors who where evaluating her CMTC syndrome. Then our doctors here at The Cleveland Clinic hospital also confirmed that she has several clinical symptoms of Proteus including a problem with blood clots. When they presented there findings to the N.I.H. they were told that she most likely didn't have Proteus. They never saw her in person at the N.I.H., so we have that issue to deal with now.
Our next step is to try and contact Dr. M. Cohen in Nova Scotia as he pioneered the Proteus studies. So maybe that's an options for you. We also have friends in The Netherlands who have a 8 year old son who also has Proteus and CMTC together. Their web site is http://www.proteus-syndrome.nl/index.php but be warned the site is in Dutch but they do speak English if you contact them via email or call. Good luck in your quest and we look forward to seeing Mandy on another program.
Thanks very much again!
I'm meeting with Mandy tomorrow (Friday) so I'll tell her you've seen her on TLC
Thanks for the background info to the Neterhlands too.
Best wihses
Eamonn
Dear Eamonn,
Please let me know if you need further assistance. I'm the founder and president of the worldwide not-for-profit patientorganisation which supports CMTC patients all over the world. Ed has been here and he met the team of doctors in the Netherlands for a free medical examination. If you would like to have a second/third opinion please send me some pictures and a description.
We do have several members with CMTC and Proteus and our website is not only in Dutch but also in English. I intend to be in Washington DC again in the beginning of July. Please take a look at: www.cmtc.nl.
Lex van der Heijden
Dear Lex
Thank you very much for your reply. I'm sorry it's taken me so long to get back to you. I'm about to look at the web site.
Would it be possible to discuss the potential for Mandy to visit the Netherlands? It would be great for Mandy obviously but as well as that, it could be very good for everyone concered to get a little morepublicity through our network documentary (on Channel Five in the UK).
my direct email address is eamonn@centini.co.uk
I'd love to have a conversation if possible.
Best wishes
Eamonn
Please try http://www.proteus-syndrome.org.uk/
Tracey Whitewood-Neal might be able to supply you with a name of a doctor in the UK who might know Proteus and should be able to give a proper diagnosis.
Lex van der Heijden
Hi Lex
Thanks for your reply. We're in contact with Tracey Whitewood-Neal adn she's being very helpful. However we are keen to travel to Holland or USa to get some second opinions. So if you can help we'd be grateful.
Best wishes
Eamonn O'Neal
Hi Eamonn,
We can arrange a free medical examination in the Netherlands but does your child have CMTC at all? We offer this option to our members so there should be a CMTC component. When you are a member you can contact other members as well to exchange knowledge and experience. We do have several members with CMTC and Proteus (NL, Belgium and the USA if I remember correctly). At this very moment we have 121 members in 17 countries.
Lex van der Heijden
Hello, I am not really sure how to begin because I have never really replied to any message boards like this. First of all my name is Melissa and my daughter is Hannah (13 yrs old). We live in the U.S. She was diagnosed with Proteus Syndrome at 15 days old. But diagnosis was confirmed (80% sure) when she was 16 months old when we attended a Proteus Syndrome conference at NIH several years ago. I met other families there, with children with Proteus Syndrome. Several years have past since then and I have not returned for conferences, I think because I always felt that my daughters symptoms of Proteus were so different from others that we had met. Which brings me here, I was watching the program on TLC with Mandy, I find so many more similarities between my daughter and Mandy regarding symptoms. Im not really sure what to expect from posting, was hoping maybe to find someone with Proteus who was more like my daughter. I hope this message finds you well.
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