Radio Interview Video With Dercum's Patient

[matt]

I found this 7 minute video through Dr. Karen Herbst site and I found it interesting.

They did a fund raising a couple of years ago which is why they were on the radio.

Dercum's patient Mindy Willert talks about her symptoms (tumors, lymphadema where her body fills up with fluids, foggy brain) and the possible causes.

She mentions some new type of treatment CVAC sessions which is not yet proved by the FDA but that it helps to clear brain for a while. I wonder what this treatment is?

She knows the disease is very rare disease with no know cure yet, only one doctor actively researches it (Dr. Herbst) and there's no proven genetic background for it but she also knows that steroids have been known to cause Dercum's Disease.

She says she was asthmatic as a child and was exposed to high doses of steroids.

http://www.viddler.com/v/edda7e65

[MarkX3]

I wonder which steroids,

From what we know, and seen in the past, some people had good success. I'm so tired of these things causing me being tired that I am tired of being tired, and so on... everyday seems like a struggle, everyday its the same thing over and over, pain, feeling of helplessness, pain, and more crap sh(* mother f*(&*(

[Mindy]

Thank you for sharing my story and spreading awareness. My children now are showing symptoms of Dercums. Please feel free to contact me via Facebook. Dr. Herbst has given me a better quality of life and the CVAC is awesome!

[matt]

Hi Mindy, thanks for posting!

I didn't know what this CVAC treatment was before but now I do, thanks to you!

CVAC = Cyclic Variations in Altitude Conditioning.

This means that the whole body undergoes a cyclic pneumatic compression using a high-performance altitude simulator. The patient sits in the simulator that has a large window resembling the canopy windshield of a fighter jet. The CVAC process exposes individual users to various simulated altitudes arranged into precise patterns. Each session consists of between 300 and 500 cyclic altitude changes in a 20-minute period with an average rate of change of 30.5 m/s and an approximate cumulative change of 365,760 m in a 20-minute session.

CVAC chamber to help to reduce extra fluids in tissue.

I'm glad to hear it helps people with Dercum's.

If someone else is interested I found a CVAC Facebook page through Mindy's FB page. From there you can find contacts and more info.

I see there are few locations in US providing CVAC therapy: http://www.cvacsystems.com/index.php/locations/

And there's even a study by Dr. Herbst which supports Mindy's words that CVAC helps to reduce pain associated with Dercum's.