This was prepared by a patient/friend of mine:
Hello Everyone: Dr. Herbst let me know about the opportunity to have the FDA put Lipedema and other fat related disorders, such as Dercum's, Madelug's disease and familial multiple lipomatosis on the radar for research and development. I have included the link to their website. NOTE: the deadline for comments is November 1st. Here is the website to comment electronically: http://www.regulations.gov/#!docketDetail;D=FDA-2012-N-0967 When you get to the website you will see the brown box with an N and the title: Prescription Drug User Free Act Patient-Focused Drug Development Meeting. Click on "Comment Now." You will be directed to the comment page. Enter your personal information (not required) and the *required and data with the earth symbol. Country: scroll to United States. State or Province. Organization Name: I put Fat Disorders Research Society. Submitter's Representative: Dr. Karen Herbst. Category: Scroll to bottom of the list: Individual Consumer Then go to 2. Type comment. As you type, you will see the number of characters you have remaining under the comment box. You can see a preview of your comments when you click on the "Preview Comment" in box 4. The "Preview Comment" page allows you to print your comment. I highly recommend you do this for future reference. FYI: since there is a 2,000 character limit in the comments section, so single space between sentences and no spaces between some commas, increases number of characters you can use. In case you would like to forward to anyone else you think might be able to comment and help. The comments of spouses and friends would also help contribute to increase awareness. We need to flood FDA, because they are only going to include 20 diseases, and no Fat Related Disorders are on the list of 39 being considered. The message shown below is what I submitted this morning. Thank you for taking the time to help. I request that lipedema (myalgic lipedema or big leg syndrome) be included in the Patient Focused Drug Development Initiative. I was diagnosed with this disorder after several years of misdiagnoses and failed treatments. With the help of Dr. Karen Herbst, I learned that in 1940 the Mayo clinic identified lipedema. It is a complex disorder involving the microvasculature disfunction (microangiopathy). The lives of more than 11% of the female population are significantly impacted by this disorder. Some men with high estrogen levels (such as hypogonadism or liver disease) may also have lipedema. This disorder is inherited passed down by mother or father to their children. People with lipedema share the following traits:1)All ethnic and income populations are affected;2)permanent disabilities develop, which prevent the ability to work or perform and enjoy everyday activities;3)patients are sick for decades and daily treatments include,a)wrapping arms and legs;b)using lymphatic pumps;c)wearing tight compression garments;d)performing daily manual lymph draining massage. Persons with lipedema often become housebound, bedridden, or must use mobility assistive devices such as wheelchairs. How has lipedema affected my life? When I was about 13 years old, I began to experience symptoms, but did not know I had lipedema until I was 57. As a result, I am now in stage two of this illness. I tell people that pain is my constant companion, 24/7, 365 days a year. I am robbed of effective sleep because of the pain, and getting up many times to eliminate lymphatic fluid. I need walking aids and experience frequent discrimination by family members and the public. I am often called a penguin, due to my inability to walk using a normal gait. I lost my job 18 months before I could retire with full benefits. I lose at least 3 hours everyday, managing my symptoms. Since there is still no effective treatment, and help prevent further suffering, please include lipedema in this initiative.
66 Comments
Mary Lynn Doan
10/28/2012 04:55:48 pm
Here is what I added:
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erica philip
10/14/2017 08:27:16 pm
DIVORCE AND MARITAL BREAKTHROUGH
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2/19/2013 11:57:04 pm
I'm sorry, I posted first to the wrong topic :(
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3/13/2013 07:41:51 pm
I never heard about this disease, yet i saw many people suffering with heavy illness which has no cure.
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4/11/2013 07:03:32 pm
You have indeed posted valuable information regarding fat related disorders. I will surely make a note of it.
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4/12/2013 04:29:06 pm
I was completely unaware of the fact that lipedema is one of the fat related disorders. Thanks for posting such valuable information.
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4/17/2013 04:30:11 pm
This kind of problem is increasing now a days and it may be because of unawareness. Every time i read your blog i found so many new interesting facts.
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1/27/2014 11:32:24 pm
Thank you for another essential article. Where else could anyone get that kind of information in such a complete way of writing
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6/10/2016 03:16:35 am
The comments of spouses and friends would also help contribute to increase awareness.
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4/26/2013 08:01:49 pm
I was not aware of the information related to Lipedema. Thanks for sharing such informative post.
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6/11/2013 04:07:33 pm
This is one of the information I was looking for and thanks for a great read from you. Fat related disorders are increasing on a high roll nowadays and the uncontrolled diet practice is a cause for it. Thanks for posting that gives a hint of the lipedema and this is indeed a valuable one for me.
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7/12/2013 04:28:07 pm
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7/14/2013 11:48:57 am
Lipedema, known as Lipoedema in Europe, is a chronic disorder of the adipose tissue generally affecting the legs, which causes the legs, and sometimes the arms, but not the feet, to accumulate fatty tissue. I just wanna say thank you for sharing the content and wish you all the best for your website and your whole team.
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10/1/2013 02:56:10 pm
The "Preview Comment" page allows you to print your comment. I highly recommend you do this for future reference.
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10/10/2013 11:29:00 pm
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10/11/2013 07:25:22 pm
Thank you for putting this information into one place. This is highly informatics, crisp and clear.
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11/5/2013 03:28:58 pm
I think it is a mixture of having a flair for the thing that you are doing; knowing that it is not enough, that you have got to have hard work and a certain sense of purpose.
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11/11/2013 07:56:36 pm
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11/21/2013 08:24:12 pm
This kind of problem is increasing now a days and it may be because of unawareness. Every time i read your blog i found so many new interesting facts.
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11/22/2013 09:19:54 pm
I was completely unaware of the fact that lipedema is one of the fat related disorders. Thanks for posting such valuable information.
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12/3/2013 06:17:34 pm
I was completely unaware of the fact that lipedema is one of the fat related disorders. Thanks for posting such valuable information.
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12/7/2013 04:11:45 pm
I think it is a mixture of having a flair for the thing that you are doing; knowing that it is not enough, that you have got to have hard work and a certain sense of purpose.
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2/10/2014 02:36:47 pm
Mike. I’ve never owned a Fuji, so I can’t really say for sure. Sorry. If the gi isn’t pre-shrunk and it fits you well now, you’ll probably be in trouble if you dry it.
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AuthorKaren Herbst, a physician, educator and fat and lymphatic disease advocate Archives
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