What is Dercum Disease?
"Adiposa Delorosa"
Dercum Disease, also known as "Adipos Delorosa" was first described in 1892 by Francis Xavier Dercum. The condition is characterized by the presence of multiple painful subcutaneous lipomas. These lipomas can be found in the trunk, upper arms, and, upper legs. The pain individuals experience can be devastating. Adult women are affected more, but men may be affected as well. Additional symptoms may occur in individuals with Dercum Disease including fatigue, generalized weakness, a tendency to bruise easily, headaches, irritability, and stiffness after resting, especially in the morning.
No specific treatment exists for Dercum Disease. Treatment is directed toward the specific symptoms that are apparent in each individual and is primarily focus on easing the characteristic painful episodes.
Photo Credits: Cumulative symptoms and signs in 110 individuals with Dercum’s disease according to a questionnaire performed by Herbst and Asare Bediako. AD: Adiposis dolorosa, which is a synonym to Dercum’s disease. The endocrinologist, 2007 7. Copyright: Lippincott Williams and Wilkins. Reprinted with permission.
What is Lipedema?
"The Painful Fat Syndrome"
Lipedema is a condition that is common, but not commonly diagnosed. Lipedema is a disorder of the adipose tissue (fat) that is often mistaken for simple obesity and almost exclusively occurring in women. It was first described in 1940 at the Mayo clinic by Drs. Allen and Hines.
Lipedema fat is located just under the skin on the limbs including upper arms, hips, buttocks, thighs, lower legs, generally sparing the trunk and feet. It feels nodular when palpated, may be painful to touch, and often has prominent superficial veins. Some people may describe the feeling similar to a "bean bag" or "grains of rice".
Lipedema can be characterized into four stages and five types.
Photo Credits: www.lipedemaproject.org
Who We Are
I am La'Tonzia L. Adams-Sheeley, MD, MS, FCAP, FASCP, CLT, a Pathologist and Medical Director at an area hospital. May 2019, I was diagnosed with Stage 2-3, Type 3-4 Lipedema with beginning signs of lipo-lymphedema. This diagnosis inspired me to learn as much as possible about lipedema and other Subcutaneous Adipose Tissue (SAT) Diseases. It was shocking to realize there are few physicians who truly understand and treat these conditions. To address this disparity, I took the leap and became a Certified Lymphedema Therapist.
I am Kathe Hotz, OTR/L CLT, an Occupational Therapist who treats lymphedema, lipedema, and other related conditions. Reducing the lymphedema/lipedema is what gives people hope that they can manage their condition and it won't keep getting worse. I too have Lipedema; therefore, I know the struggles and wanted have a group.
Our Purpose
Power in Understanding
As a physician, it was in my nature to research this condition. To my surprise there is very little known; however, it affects many. When seeking support and I discovered there were no support groups in Oregon. I decided to start one with the assistance of Kathe Hotz, OTR/L CLT.
It is our goal to provide an opportunity for individuals with Lipedema & Dercum Disease to share personal experiences and feelings, and educated coping strategies.
Since our founding in 2019, we have been determined to make an impact. The core of our efforts is to bring knowledge, compassion, and empowerment to our members. Through all of our endeavors we hope to display the conviction behind our beliefs.
Support Group
Unfortunately, due to circumstances beyond our control October's meeting has been cancelled.
Next Meeting:
TBA
COVID-19
This meeting will take place via ZOOM only.
If interested enter your information via the 'Join Us' link and the meeting information will be sent to you.
LifeQual
1975 NW 167th Place, Suite #100
Beaverton, OR 97006
Zoom Meeting
Connection Information sent via Email
“Alone we can do so little; TOGETHER we can do so much."
-Helen Keller-
Join Us!
Oregon Lipedema/Dercum Disease Support Group
1975 NW 167th Place, Suite #100
Beaverton, OR 97006