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Dr. in Baltimore, MD that specializes in AHO

Deena8178 Message
28 Nov 2009, 07:21 AM

I wanted to share some information on a Dr. in Baltimore that specializes in AHO that we see. There is a clinic being open for Albright's and if anyone is interested the number and everything needed is listed in the letter. I wanted you to know that I am moving my clinic and my laboratory to the Kennedy Krieger Institute across from the Johns Hopkins Hospital as of Jan 2nd. I am working on a brochure and letters to go to families, but it would certainly be wonderful if you could start spreading the word that I will be starting an official Albright's Center at the Kennedy Krieger Institute in January. All donations will now go to the Kennedy Krieger Institute (address is near the bottom of the e-mail). My lab will be there and focus on Albright's, too. I will also be in charge of the Developmental Bone Disorders clinic. I will still be on the faculty in Peds Endocrine at Johns Hopkins, but as of January 2nd, I will now have my main position as the head of the Albright's Center and also the Developmental Bone Clinic as both Faculty and Research Scientist at the Kennedy Krieger Institute (KKI). KKI is world-renowned for helping children with rare disorders, and they want to expand to have a group of investigators who do clinical and lab research on rare diseases -- they also needed a bone/endocrine specialist. This was a job offer that dropped out of heaven. This is really a tremendous breakthrough for Albright's if all goes well, but I need to spread the word to patients who are in need of this clinic. There will be coordination of care at the time of the visit with the possibility of seeing PT, OT, orthopedics, neurocognitive, neuropsychology, speech, nutrition, rehab, specific testing for cognitive/learning disabilities and psychiatric disorders, etc, etc. I am trying to make this extremely comprehensive. The number to set up appointments is: 443-923-9400 and appts can be made starting Dec. 2nd. I will have my new phone and e-mail address soon. I will also be dependent on patients/families helping with fund-raising to keep the center afloat. Donations will now be directed to the Kennedy Krieger Institute instead of Hopkins. We will hopefully be able to have a huge benefit in honor of the start of this Center -- I never thought I'd see the day. All donations should be directed to: Kennedy Krieger Institute Attention: Mr. Joseph Stein, 6th floor Tower 707 N. Broadway Baltimore, MD 21205 with the check stating at the bottom "For Dr. Germain-Lee's Albright's Research" and also a note enclosed with the check if possible. This is really a breakthrough for Albright's. Happy Thanksgiving and hope all is well with all of you -- and say hi to Carter for me. Best, Emily Emily L. Germain-Lee, M.D. Associate Professor, Pediatrics Division of Pediatric Endocrinology The Johns Hopkins University School of Medicine CMSC 406 600 N. Wolfe St. Baltimore, MD 21287 Phone: 410-502-7566 (office) 410-955-6463 (patient/clinical concerns) Fax: 410-502-7580 (office) 410-955-9773 (patient/clinical concerns)
AHOmom1 Message
31 Jan 2010, 09:20 PM

We just received an initial diagnosis of AHO from Children's Hospital in Washington, DC on Friday, 1/29/10. Today is Sunday, 1/31/10. I'm wondering if we should switch to Dr. Germain-Lee now or wait until we know which type of AHO is found in my daughter. Thoughts or suggestions would be very much appreciated.
Deena8178 Message
1 Feb 2010, 01:58 AM

I would go ahead and call to set up an appt. with her if it were me. She treats either AHO and is the top specialist in this syndrome. We love her! We see an endo dr. for him medication but we also stay in contact with her also on everything we do.
rare2 Message
1 Feb 2010, 12:43 PM

Hello I im 25 yrs old.. ive just found out that i have AHO bout couple yrs ago.. but i also have hypothyroidisme.. how can i know what type i have.. they never found out when i was younger.. can u please help me.. soo does this mean i will in the future will have ostioporosises.. or will i be the same .. ill end up in a wheel chair.. anyways thanks very much
Star7 Message
1 Feb 2010, 01:05 PM

There is AHO/PHP 1A and AHO/PHP 1B. If you have type 1B you will have the physical features of AHO but not the hormonal/endocrine issues. If you have 1A you will have issues with your hormones, calcium levels etc. You should be followed by an endocrinologist who specializes in the effects of endocrine issues on bone health as this disease influences both.
lizjohn Message
1 Feb 2010, 01:28 PM

You should go see a geneticist and an endocrinologist with this question. The geneticist will be able to confirm where the mutation is on your genes that has lead to AHO and will be able to tell you the type of PHP you have. They can also tell you how you got it, if they can test your parents' blood, i.e., if it was a spontaneous mutation or passed. This will help your treatment, so definitely go do it.
AHOmom1 Message
24 Feb 2010, 03:30 AM

Sent an email to Dr. Germain-Lee about my daughter. I shared what was found in the initial genetics consultation at Children's Hospital. Kristin, a research assistant for Dr. Germain-Lee called within 48 hr. after the receipt of my email to tell me that Dr. Germain-Lee is putting us on her patient list. All we have to do know is call and schedule an appointment after we have completed all of the testing ordered by Children's. I like her already!!!!!