• Home
  • Dercum's Disease
  • FML
  • Lipedema
  • Madelung's disease
  • MEDIA
  • DOWNLOAD HELPFUL INFO
  • Blog
  • Publications
KAREN L. HERBST, PHD, MD
  • Home
  • Dercum's Disease
  • FML
  • Lipedema
  • Madelung's disease
  • MEDIA
  • DOWNLOAD HELPFUL INFO
  • Blog
  • Publications

lipedema patient raises awareness

9/5/2013

40 Comments

 
Lipedema Patient
Raises Awareness

Posted
on August 29,
2013
by Lymphatic Research
Foundation




Catherine Seo with Lymphatic Research 
Foundation Executive Director Bill Repicci


Lymphatic
Research Foundation
Executive Director Bill Repicci met with
Catherine Seo, a professor and documentary film-maker, last week to be
interviewed on the progress being made in lymphatic research and in building
awareness for lymphatic diseases.


Catherine was diagnosed with lipedema, a chronic, hereditary, and genetic
disorder of the adipose tissue generally affecting the legs and, in some cases,
the upper arms. As lipedema progresses, patients become increasingly heavy in
the lower body. The additional, expanding fat cells interfere with the pathways
of lymphatic vessels, and patients can develop secondary lymphedema, a condition
known as lipo-lymphedema.


While lipedema predominantly affects women, there are a few cases in men.
Believed to be caused or exacerbated by hormonal disturbance, lipedema usually is triggered at puberty, but can begin or worsen during or after pregnancy, at peri-menopause, or following gynecological surgery or any surgery with anesthesia. Estimates of the incidence of lipedema vary widely, and may be as high as 17 million or 11% of the post-puberty female population. Catherine was originally misdiagnosed and underwent a series of five surgeries, which resulted in secondary lymphedema.


Catherine’s experiences prompted her to research these disorders. She
discovered that both lipedema and lymphedema are often difficult to diagnose
and, despite their prevalence, receive little attention, research funding, and
focus. Catherine has looked at the cultural issues as well, especially in the
United States, which stigmatize and blame women for weight issues. In order to
help others who may suffer from these illnesses, Catherine has developed a
website, www.lipoedema-simplified.org, has scheduled a
series of speaking engagements, and is producing a documentary, You Mean
It’s Not My Fault: Lipedema – A Fat Disorder
.


“I deeply hope this information can save even one person from the circuitous,
painful, and difficult journey that I’ve navigated,” Catherine said. “There is
hope.”

40 Comments
Lisa Elliott link
9/4/2013 11:40:15 pm

I have very severe Lipo-Lymphedema as diagnosed by Dr. Karen Herbst along with secondary Dercum's Disease.
I am very I'll and getting worse daily. I am desparate for someone to find a way to help me. We have put into action over the last 4 years all the suggestions Dr. Herbst has made, to no avail. We cannot find a vendor that is willing to custom make me compression garments for sleeping and Lymphatic Pump for my legs. The Insurance has approved that they will cover it however I believe it is due to the Gross Disfigurement of my legs that no.one can help me. Thank you for all you are trying to do to bring awareness to this horrible debilitating Disease.

Reply
erica philip
10/14/2017 08:26:39 pm

DIVORCE AND MARITAL BREAKTHROUGH

It all started when my husband cheated on me with another woman unknowing to him that the woman is a wizard, the woman castes a spell on my husband which made my husband change his feelings towards me and the kids and broke our 6 years marriage. i was confused and stressed because of the pains of being a single mother, when i called a friend and explained my marital challenges to her, she instructed and directed me to contact a great powerful spell caster called Dr. Ugo Wonders living in Florida. i contacted Dr. Ugo and explained my problems, he assured me his help and it was 100% guaranteed. i provided the materials for the spell and in 48 hours, after Dr Ugo Wonders of generalspelltemple@gmail.com finished casting the spell, my husband was free from the evil woman spell and he came back home to us a day after begging us to forgive him. i was so shocked and short of words and here i am today happily testifying so the world can know how this great man helped me with his real powerful spell.
To every one with marital problem, divorce issues, lost lover or any relationship related issues, you can contact Dr. Ugo wonders the ultimate spell caster via his email address generalspelltemple@gmail.com or call his mobile number directly on +13863369876

http://generalspelltempleblog.wordpress.com

Reply
Hanne Isabelle
11/14/2013 07:21:43 am

Dear Karen! I couldnt find any contact information, so Im going to post it here, hoping you read it!
Im a pharmasist living in Norway, and I also have lipedema. Thanks to your site, i managed to diagnose myself with the condition. Since Im a pharmacist I have done some research on my own and am searching and reading throug publications in trusted databases. And I noticed one published in septemer 2013 by Godoy et al called "Lipedema: Is Aesthetic Cellulite an Aggravating Factor for Limb Perimeter?" link to the published document can be found here (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3800296/)

This was of interest because in my case Ive had some cellulits in my adultlife(29 at the moment) and my oncet started 1,5 year ago when I had an infection in my esophagus, a non threatening one but though ill enough to cause fever and laying in bed for a week. about a week later I suddenly had my right leg circumference aprx 11cm more than the left one.Which in the end led to lipedema.
So I hope you can look at this document,
in advance,

Hanne Isabelle

Reply
Oona
3/9/2016 11:10:45 am

Hello,

I am an expat living in the USA. I would love to speak to others in Norway with lipedema and find out your experience with getting treatment there.

Thanks,

Oona.

Reply
Phil jefferies
1/23/2014 12:33:13 pm

Karen,
I am a 55 yo man from Australia, I have had dercums recently diagnosed, and would like to share the following info with you in case it helps others. My disease has become quite aggressive since december 2012 after using cortisone cream on my skin. I had experienced cluster headaches following a flouride treatment in august 2012, after cortisone use cluster headaches lasted for up to 5 or six weeks with very little respite and no sleep. at this time i had first painful lumps om my breast. My lipomae are mainly occurring on my scalp face and neck, but in 1 yr have covered most of my body. the slightest touch can cause agony or cluster headaches for weeks if on scalp, but now using lyrica with some success 25 mg prn. usually housebound, but if i go out to shop i last about 2hrs then need 4-5hrs rest.If i have commitments I have found that dexamphetamine 40mg has been very effective for pain and energy, and an easier option than IV Lidocaine every 15 mins. residual coverage from dexamphet is around 3 days.
I get a lot of new lipomae if i eat the wrong foods. factory farmed dairy is very bad, organic dairy no problems. Generally natural fresh food is best. I am fairly convinced that industrial pollutants, food and water additives and possibly EMF exposure are the main catalyst, as a former industrial High voltage electrician I have had a lot of exposure to PCBs and 1,1,1 Trichlorethane. I hope this is helpful and thanks for your efforts and blog
Thanks Phil Jefferies
the main catalysts

Reply
Debbie
10/18/2016 10:09:46 pm

Hi Phil,

Regarding main catalysts; interestingly, I was googling "EMF causes Dercum's Disease" and came up with your comment here.

I very much agree with your entire last paragraph and think the scientific medical community should look into the correlation of EMFs affecting individuals with DD.

I also believe GMO's and chemical additives in our environment are possibly mutating our genetics.

Thanks for your post!

Debbie

Reply
mary jo phipps
7/17/2015 12:08:05 am

Thank you for ll you have done. I am just starting to try to battle Lipedema and Decums Disease. I probably wouldn't have had a chance if you and Dr Herbst had not preceded with your efforts. I am very grateful.

Reply
Best MBA college in Greater Noida link
5/15/2018 11:50:34 pm

Are you looking for Top MBA college in Greater Noida? So Mangalmay Group of institution is one of the Best MBA college in Greater Noida. With continuous record of above 93% placement.

Reply
custom champagne flutes link
5/1/2016 03:05:54 am

Good post but I was wondering if you could write a little more on this subject? I’d be very thankful if you could elaborate a little bit further. Appreciate it

Reply
raw organic activated charcoal link
5/2/2016 12:15:09 am

It would seem that you spend a considerable measure of exertion and time on your web journal. I have bookmarked it and I am anticipating perusing new articles. Keep doing awesome

Reply
บาคาร่า link
5/7/2016 04:09:19 am

Catherine was originally misdiagnosed and underwent a series of five surgeries, which resulted in secondary lymphedema.

Reply
crystal wine glass link
5/2/2016 03:26:07 am

Excellent .. Amazing .. I’ll bookmark your blog and take the feeds also…I’m happy to find so many useful info here in the post. we need work out more techniques in this regard. thanks for sharing

Reply
flywire doors link
5/3/2016 12:30:29 am

Making it very seek out online websites utilizing useful information on specified niche and provides the criminals to professor some of our belief and also report.

Reply
Megadrox link
5/3/2016 03:34:18 am

In this Online marketing article, let us talk concerning the importance of following a law and never following an extremely narrowly customized ethical edict which may be espoused through individuals or even organizations.

Reply
this site link
5/4/2016 12:16:00 am

This content is written very well. Your use of formatting when making your points makes your observations very clear and easy to understand. Thank you

Reply
sleep apnea testing link
5/7/2016 12:18:44 am

This content is written very well. Your use of formatting when making your points makes your observations very clear and easy to understand.

Reply
foot odor remedies link
5/8/2016 03:34:02 am

This article is such a nice and interesting one, I'm very satisfied with the provided contents. I hope more excellent articles would be posted in your website.

Reply
this site link
5/15/2016 01:57:25 am



Making it very seek out online websites utilizing useful information on specified niche and provides the criminals to professor some of our belief and also report.

Reply
Ladies Nightwear link
2/2/2017 03:21:46 am

Thanks a lot for sharing your informative blog. All the information are extremely helpful. Thanks a lot

Reply
Help With Finance Assignment link
4/3/2017 12:17:52 am

This is really great work. Thank you for sharing such a useful information here in the blog.

Reply
Cold Fusion Homework Help link
4/3/2017 02:30:34 am

It is a well-maintained site where people can learn about various topics. I am looking forward to read more blogs from here. Students finding it tough to write an assignment can try our online assignment help and can get their coursework written by assignment experts.

Reply
Caseism.com link
4/3/2017 04:04:01 am

Much obliged to you a considerable measure for setting aside the ideal opportunity for you to share such a decent data.

Reply
Do My Civil Engineering Assignments link
4/3/2017 05:06:13 am

I am certain this post has offered me some assistance with saving numerous hours of perusing other related presents just on find what I was searching for. Much obliged!

Reply
Do My Engineering Assignments link
4/3/2017 05:29:26 am

Good way of telling, good post to take facts regarding my presentation subject matter, which i am going to deliver in my college.

Reply
auditing homework solutions link
4/3/2017 05:58:47 am

Hi buddy, your blog' s design is simple and clean and i like it. Your blog posts about Online Dissertation Help are superb. Please keep them coming. Greets!!

Reply
Marketing Assignment Help link
4/14/2017 02:45:48 am

If you're a creative thinker and like to explore alternative solutions to problems, no doubt you should try writing service.

Reply
MathCad Homework Help link
4/14/2017 03:33:01 am

Great info! I recently came across your blog and have been reading along. I thought I would leave my first comment. I don’t know what to say except that I have

Reply
Matlab Assignment Help link
4/14/2017 03:46:20 am

I appreciate this work amazing post for us I like it.

Reply
Sociology Homework Help link
4/14/2017 04:31:57 am

My friend recommended this blog and he was totally right keep up the fantastic work!

Reply
Massage Therapist in Brampton link
7/14/2017 03:18:10 am

Nice article. You raise some interesting points. Thank you.

Reply
Life Experience Degrees link
10/9/2017 12:59:43 pm

I enjoy what number of problems in our modern day education method are offered here!
I’m trainees myself and I know from individual encounter about some concerns that are referred to
on this page.

Reply
Instagram uploader link
11/1/2017 07:38:06 am

Thanks so much for this information. I have to let you know I concur on several of the points you make here and others may require some further review, but I can see your viewpoint

Reply
instagram online link
11/1/2017 08:16:10 am

Extraordinarily pleasing post. This is my first time I visit here. I discovered such endless stuff in your blog particularly its exchange. Truly its phenomenal article. Keep it up.

Reply
instagram online link
11/1/2017 08:25:16 am

Regular visits listed here are the easiest method to appreciate your energy, which is why why I am going to the website everyday, searching for new, interesting info.

Reply
youtube-mp3.org link
11/1/2017 08:32:39 am

this is great Awesome! Really nice post, thanks!

Reply
Our Services link
11/11/2017 01:52:42 am

only professional writers can make this kind of material, cheers

Reply
C# solutions provider link
1/7/2018 10:30:41 pm

Economicskey Provides quality Economics homework help for students.

Reply
aziderm gel link
10/8/2021 05:03:28 am

<b><a href="https://www.onegeneric.com/product/buy-azelaic-20-gel-online-aziderm-gel">aziderm gel</a></b> is a non-antibiotic topical acne treatment that is available as a 20% cream and a 15% gel or foam, and it is often used as an adjuvant acne treatment. It has comedolytic, antimicrobial, and anti-inflammatory properties.

Reply
https://www.gdpuk.com/news/latest-news/1592-gdc-wants-expert-volunteers link
8/17/2022 11:57:31 pm

Hi there! Nice stuff, do keep me posted when you post again something like this

Reply
안전놀이터 link
8/23/2022 06:30:27 am

Thanks so much for this information. I have to let you know I concur on several of the points you make here and others may require some further review, but I can see your viewpoint.

Reply



Leave a Reply.

    Author

    Karen Herbst, a physician, educator and fat and lymphatic disease advocate

    Archives

    July 2017
    March 2014
    September 2013
    August 2013
    May 2013
    October 2012
    August 2012
    July 2012
    June 2012
    April 2012
    March 2012

    Categories

    All
    Event
    Rad Awareness
    Rad Diet

    RSS Feed

  • Home
  • Dercum's Disease
  • FML
  • Lipedema
  • Madelung's disease
  • MEDIA
  • DOWNLOAD HELPFUL INFO
  • Blog
  • Publications