To Everyone: Contacting Dr. Harbison

[Guest guest]

Hello everyone -

As many of you know, there is probably only one pediatric

endocrinologist in the US that is considered an " expert " in RSS - Dr.

Madeleine Harbison in New York City. This does NOT mean that there

are not absolutely wonderful peds endos in the US - it just means

that with rare disorders, we can't expect every peds endo to know

about them all.

This being said, many of you are aware of the troubles some have been

having lately in getting responses from Dr. Harbison (Dr. H).

Jodi and I have discussed this with Dr. Harbison and have developed a

plan. You can understand and be compassionate about the fact that

she donates a HUGE amount of time to RSS families that are not her

patients -- both at the MAGIC convention and through email. She

loves this part of her job, but it is impacting her ability to also

respond to her patients.

Hence, what we are asking is the following:

1) If you are a New York patient of Dr. Harbison's, clearly feel free

to contact her regarding any issue with your child, either by phone

or by email.

2) If you are NOT a New York patient of Dr. Harbison's (even if you

did see her at no charge at the MAGIC convention), and you have a

question, please email either Jodi Zwain or myself, Salem.

Jodi's email is magicrss@ hotmail.com and mine is magicrss@

mindspring.com. Dr. Harbison offers her services through the MAGIC

Foundation's RSS Division, and I am the RSS division director and

Jodi is our email coordinator.

Once a week, Jodi and I will compile one lengthy document with your

questions to Dr. Harbison. She will know to expect this on a

specific day of the week (probably Thursday). If we feel that your

email warrants more immediate attention, Jodi or I will phone Dr.

Harbison.

If you have a medical emergency, and you are not a patient of Dr.

Harbison's, we do truly suggest that you contact your own physician.

We realize that not everyone can travel to New York, but as Dr. H

always says, each child needs one " captain " of their care. You as a

parent have to trust the " Captain " you have chosen and feel free to

question the captain's decision and know that your relationship would

not be harmed. If your " captain " isn't this way, you need to find a

new " captain. " She also says that your captain/physician should feel

comfortable calling or emailing her for advice, either in typical

problems or emergencies. She is not a better doctor than your

doctor, just more experienced with the issues that come about with

RSS. And you can phrase it that way with your physician.

Dr. Harbison is absolutely comfortable and welcomes receiving emails

or phone calls from physicians, and we will distribute her email

address for those physicians.

I hope everyone understands. Dr. Harbison currently works an

estimated 12-14 hour day, and then goes home to her husband... and

then her email awaits. Sometimes she can get more than 5-6 emails a

day from NON-RSS patients. Responding to these emails can take her 2-

3 hours a night. She simply doesn't have that amount of time, and

hence, puts off answering the emails for days and days, and then what

happens is that people who ARE patients are also emailing her and

they don't get a response either.

We hope that the plan we are developing will work for all parties.

Do know, however, that if you are new and emailing her with a " this

is my child and all their characteristics and history and what do you

think " - please give her several weeks to respond. She does not take

her job lightly and will spend a great deal of time. Also, she

really needs to see photos so make sure to get someone to scan them

in for you, or mail a letter and photo to her.

Dr. Harbison's email address will not be allowed to be posted on the

listserve any longer. She was uncomfortable with knowing that was

happening. You may contact her office directly by phone at 212-746-

3462 of email Jodi or I.

Thank you for your patience and understanding.

Salem