Let's talk about SEX! I need an expert - grin!

[Guest guest]

I am currently working on organizing the annual conference for the Hermansky-Pudlak Syndrome Network. Those of us with HPS types 1 and 4 get PF 100 percent of the time, usually in our 30s.

I asked for session suggestions from our membership, and one that came up several times is dealing with chronic illness and relationships and sexuality. Everything from the stress it puts on your relationships to the down and dirty how to maintain intimacy when your out of breath easily.

Some folks in our group that have done pulmonary rehab said this topic got covered in their rehabs.

Does anyone have any speaker suggestions on this topic, preferably from the New York area as I have pretty much no budget.

Thanks!

Kirkwood

Hermansky-Pudlak Syndrome albinism 02 / PF 06

[Guest guest]

,

Helen Hospital is a rehab hospital in Haverstraw NY about 45 minutes north of Manhattan. They have an excellent pulmonary rehab program and that's where I did PR back in 2006. I don't know if they have someone who might be able to speak but it's possible.

The info number for their Pulmonary rehab program is

Pellicone MD is the medical director of pulmonary rehab. His phone number is

I have no idea if they have someone who can speak on this topic but it might be worth a phone call to find out!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Monday, July 27, 2009 7:20:01 PMSubject: Let's talk about SEX! I need an expert - grin!

I am currently working on organizing the annual conference for the Hermansky-Pudlak Syndrome Network. Those of us with HPS types 1 and 4 get PF 100 percent of the time, usually in our 30s.

I asked for session suggestions from our membership, and one that came up several times is dealing with chronic illness and relationships and sexuality. Everything from the stress it puts on your relationships to the down and dirty how to maintain intimacy when your out of breath easily.

Some folks in our group that have done pulmonary rehab said this topic got covered in their rehabs.

Does anyone have any speaker suggestions on this topic, preferably from the New York area as I have pretty much no budget.

Thanks!

Kirkwood

Hermansky-Pudlak Syndrome albinism 02 / PF 06