More on the FDA Initiative to Get Drug Development in the Spotlight for Lipedema and Other Fat Disorders
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.
Shop for Fat Disorders
As the holiday season approaches and you continue to make travel arrangements, buy gifts, or purchase needed items for holiday cheer, please consider using iGive to make your purchases. You can support my reasearch into all fat disorders by using my iGive link below. By clicking on the link, you will be asked to register in iGive for my cause. Believe me, every penny counts. For example, if you want to get your whole exome sequenced (look at the sequence of every gene that you have) with copy number variation (you may have more than one gene of one kind while another person only has one of the same gene), it is $2,300.00 per person. Imagine the money needed to evaluate a whole family! But with so many people shopping through iGive, we can truly make a difference.
Thank you and Enjoy Your Holidays with Friends and Family.
Post a comment here and let me know how you are doing!
Karen Herbst, a physician, educator and fat and lymphatic disease advocate