Comments on: “What is Being Done”: An Update by Karen Herbst, PhD, MD

By: ValH

ValH — Fri, 19 Aug 2011 13:13:42 +0000

Dear vivwebb
I was so pleased to see an english sufferer on here. I have only just found this site
and would be grateful if you would let me know what diet you are on. I have lipodema and not one of any doctors I have ever seen have known what it is They tell me it is Lymphodema and I have to tell them No It Is Not and they then say they have never heard of it. very frustating. I think mine started when I was put on Hormone Replacement Therapy because before that I was a size 10
regards Val

By: joel robinson jr.

joel robinson jr. — Tue, 28 Jun 2011 17:49:32 +0000

i am positive i have dercums i have been suffering for ten years had several removed they grew back and became even more painfull, my doctor refuses to call it dercums. what kind of doctor do i need to see? reply at budyr9@yahoo.com

By: vivwebb

vivwebb — Wed, 20 Oct 2010 20:32:41 +0000

DR. HERBST WONDERFUL NEWS!!! A COMPLETE LACK OF ANY MEDICAL HELP IN UK
aM FOLLOWING YOUR RECOMMENDED DIET AND SOME WEIGHT LOSS BUT STILL HAVE MULTIPLE LIPOMAS HEAD TO TOE!!! YOU GIVE US ALL HOPE PLEASE COME TO UK SOON? TO HELP AND EDUCATE A HELL OF A LOT OF MEDICS AND SUFFERERS!!!! YOURS VIV WEBB

By: elssmarius

elssmarius — Sat, 25 Sep 2010 21:21:07 +0000

Hello,

I am glad after this reading, we have such a great Dr. Herbst,
and all our FDRS Officers.

Susan Grimshaw, Susan Smith, Kristi Lowery, Carole reed, Tina Tranfaglia.

Chapeau!

Els

By: Cynthia

Cynthia — Sun, 25 Jul 2010 08:36:19 +0000

Hello everyone, After moving and marrying a son to his long term girlfriend I only now found the time to join. Sorry…..

But how can we all thank Dr. Herbst – especially those of us who live out-side the States where – basically – nothing much is happening!!! I still get the sad “If only you would diet and exercise” routine 30 years on….

My only justification and compensation was coming to California and meeting Dr. Herbst who just confirmed and added new diagnoses to what I had already worked out myself. Thank you, thank you, thank you. But thank you as well to all those who are working for this site and to transmit all the information as it arrives!!

By: SYLVIA BURLESON

SYLVIA BURLESON — Sat, 24 Jul 2010 00:27:25 +0000

Dr Karen…you are a very special person. I saw you in Chicago at the conference with your wonderful parents and brother and saw how thin you and your family are. And yet you have chosen to devote your considerable skill and intellect to us..the most despised and least accepted people. The scorn fat people are held in is said to be the last safe prejudice. And yet here is tiny you so full of compassion for us. We are so appreciative of your kindness as we get so little elsewhere. You are our hope for the future and the future of our daughters. Your wonderful mother should write a book on how to raise children capable of changing the world. You are certainly giving us hope that change may come and our pain will be lessened. Thank you!!

By: Suzann Cheney

Suzann Cheney — Fri, 23 Jul 2010 13:19:47 +0000

Great update and yes I’m hungry too!!! Thanks for providing us with this information on all that is happening. It is exciting to read all that is coming in hopefully the near future for those of us suffering from these disorders! As always Dr. Herbst you are one in a million and I’m not sure what we would all do without you! THANK YOU SO MUCH.

By: Mary L

Mary L — Fri, 23 Jul 2010 10:44:16 +0000

I am pretty sure you are my new hero! Again, thank for your interest in us, and your willingness to help find new ways to treat and hopefully cure this disease. I am very grateful to you, and for you!

By: Caudette Pfingston

Caudette Pfingston — Tue, 13 Jul 2010 13:41:47 +0000

Dr. Herbst,

Thank you for digging deeper into this disease. You are making a real impact on the DD research. It was a real treat to meet you at the Chicago DD Convention. Forge on……we are all behind you, 100%.

By: Bev Sohn

Bev Sohn — Fri, 09 Jul 2010 18:40:04 +0000

Hello Dr Herbst,
Much appreciation from my heart to yours for all your efforts! This is a wonderful update! Now you have your fingers in genetics? Whew!! That is great news more doctors are interested. I’d like to educate more doctors in my community. Congrats on another publication! Wow, you ARE really busy! Don’t forget to have some Karen time!

Fondly,

Bev