Re: Hidradenitis

lenapecci · ‎05-11-2010

@nana59 I understand completely as I too have Hidradentis.

I have never had laser surgery and cannot offer advice on it.

For me it started at age 23 and I was not diagnosed until my late 40's after one of my surgeries. I had never even heard of it until that point. It was a relief to know what it was that I had.
Theough the HS FoundTion I found my doctor in San Diego CA. That was the closest one to where I lived. She started me on spironlactone, doxycycline and kenalog injections. Thank goodness this is the only treatment that has helped me. It has been eleven years now and I am so grateful to my doctor as I have been without flare ups.

I belong to the group the others posted on here as well as two other online groups. People share their journeys and you may find those who have had laser surgery and the results.

If I can help in any way please let me know. If you live in CA I can provide my doctors name. I know people in the East have found help from a doctor at Hershey PA medical center. I can get her name if you are out that way.

This disease causes so much pain and sometimes family and friends do not understand how bad it gets. I hope you will look into the groups. They are helpful it helps me to not feel alone with a disease not many understand.

Shelbelle · ‎03-09-2010

@nana59 wrote:
@lolakimono wrote:
@nana59
I'm sorry that you're dealing with this. I do not have this, but I have seen it.

I'm not being snarky when I suggest this.

Have you considered reaching out to Dr. Lee? She has a TV show where she flies people from all over the country (and sometimes ourside of the U.S.) and I have seen her assist when no other doctors would "touch" whatever the person was suffering with. She is really compassionate.
i watched an episode of dr lee....the patient had hidradenitis....and she sympathically told her there was nothing she could do for her....she suggested a support group....made me cry.....i've been to many dermatologists...they all say there needs to be more research to help with this disease....

This rerun of Dr Pimple Popper with Dr Lee is on the air as I type. She actually injected the patients erupted areas with steroid shots, it was painful. But she said this will calm down the affected areas, but it will not prevent further eruptions from happening. So, it seems like Dr Lee would recommend steroid shots to you.