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KAREN L. HERBST, PHD, MD
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More on the FDA Initiative to Get Drug Development in the Spotlight for Lipedema and Other Fat Disorders

10/26/2012

65 Comments

 
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.
65 Comments
Mary Lynn Doan
10/28/2012 04:55:48 pm

Here is what I added:
As a cancer survivor, I am alive because of your earlier choice to develop drugs for cancer treatment. However, I have come to understand, my cancer was a result of an untreated condition, adiposis dolorosa. This painful disorder has remained in its research infancy during its entire 124 years. Had we developed at least managing medication I would probably be writing to you with my entire body in tact rather than being in the pathology lab at the same time.
I understand that your decision is a difficult one, there are so many diseases and disorders that inflict unimaginable pain to its sufferers. Adiposis Dolorosa or Dercum's Disease, like so many others, tortures and cripples its victims.
However, unlike many other disorders, Dercum's, I believe has a fairly straight forward cause allowing for shorter term investment and quicker return. It can develop quickly but it is not infrequent that the patient has this disease for many years before diagnosis which means that if a drug were developed to manage this disease there would be plenty of time to diagnose and treat the patient. Regrettably many diseases just cannot be treated in time. All though listed as a rare disease, Dercum's is far more common than current statistics show as it is drastically under diagnosed. Finally Dercum's medication would need to be taken regularly for the entire life of the patient which would give the developer a hugh return on their investment.
As self-interested as my request is, I hope that you will consider supporting the development of a drug for Adiposis Dolorose or Dercum's Disease.

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2/19/2013 11:57:04 pm

I'm sorry, I posted first to the wrong topic :(

If I had known this earlier I would of surely posted this on Lipoma Board which gets hundreds of visitors daily.

It's all too familiar that fat disorders are not being studied enough. Almost every visitor is looking for a treatment or cure to different fat disorders. Many think that surgery isn't enough and not really an option if you have dercum's or multiple lipomatosis.

Next time you do something like this, please let me know and I'll point people here!

Thanks,
Matt
http://www.lipomaboard.com

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You have indeed taken a great step by requesting that lipedema should be included in the Patient Focused Drug Development Initiative.
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http://www.domyate.com/2016/06/05/transfer-furniture-taif شركة نقل عفش بالطائف
http://www.domyate.com/2016/06/05/transfer-furniture-yanbu شركة نقل عفش بينبع
http://www.domyate.com/2016/07/02/transfer-furniture-dammam شركة نقل عفش بالدمام
http://www.domyate.com/2017/08/10/movers-company-mecca-naql/
http://www.domyate.com شركة نقل عفش بالدمام

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شركة كيان لنقل العفش link
3/11/2020 10:55:26 am


شركة كيان لنقل العفش بالرياض والمدينة المنورة وجدة ومكة والطائف والدمام تقديم لكم دليل كامل لشركات نقل العفش بالمملكة العربية السعودية
http://mycanadafitness.com/ شركة كيان لنقل العفش
http://mycanadafitness.com/forum.html منتدي نقل العفش
http://mycanadafitness.com/movingfurnitureriyadh.html شركة نقل اثاث بالرياض
http://mycanadafitness.com/movingfurniturejaddah.html شركة نقل اثاث بجدة
http://mycanadafitness.com/movingfurnituremecca.html شركة نقل اثاث بمكة
http://mycanadafitness.com/movingfurnituretaif.html شركة نقل اثاث بالطائف
http://mycanadafitness.com/movingfurnituremadina.html شركة نقل اثاث بالمدينة المنورة
http://mycanadafitness.com/movingfurnituredammam.html شركة نقل اثاث بالدمام
http://mycanadafitness.com/movingfurniturekhobar.html شركة نقل اثاث بالخبر
http://mycanadafitness.com/movingfurnituredhahran.html شركة نقل اثاث بالظهران
http://mycanadafitness.com/movingfurniturejubail.html شركة نقل اثاث بالجبيل
http://mycanadafitness.com/movingfurnitureqatif.html شركة نقل اثاث بالقطيف
http://mycanadafitness.com/movingfurnitureahsa.html شركة نقل اثاث بالاحساء
http://mycanadafitness.com/movingfurniturekharj.html شركة نقل اثاث بالخرج
http://mycanadafitness.com/movingfurniturekhamismushit.html شركة نقل اثاث بخميس مشيط
http://mycanadafitness.com/movingfurnitureabha.html شركة نقل اثاث بابها
http://mycanadafitness.com/movingfurniturenajran.html شركة نقل اثاث بنجران
http://mycanadafitness.com/movingfurniturejazan.html شركة نقل اثاث بجازان
http://mycanadafitness.com/movingfurnitureasir.html شركة نقل اثاث بعسير
http://mycanadafitness.com/movingfurniturehail.html شركة نقل اثاث بحائل
http://mycanadafitness.com/movingfurnitureqassim.html شركة نقل عفش بالقصيم
http://mycanadafitness.com/movingfurnitureyanbu.html شركة نقل اثاث بينبع
http://mycanadafitness.com/movingfurnitureburaidah.html شركة نقل عفش ببريدة
http://mycanadafitness.com/movingfurniturehafralbatin.html شركة ن

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شركة ريلاكس لنقل العفش والاثاث link
3/11/2020 10:59:41 am


http://fullservicelavoro.com/ شركة ريلاكس لنقل العفش والاثاث
http://fullservicelavoro.com/2019/01/07/transfer-movers-taif-furniture/ شركة نقل عفش بالطائف
http://fullservicelavoro.com/2019/01/08/transfer-movers-riyadh-furniture/ شركة نقل عفش بالرياض
http://fullservicelavoro.com/2019/01/08/transfer-movers-jeddah-furniture/ شركة نقل عفش بجدة
http://fullservicelavoro.com/2019/01/01/transfer-and-movers-furniture-mecca/ شركة نقل عفش بمكة
http://fullservicelavoro.com/2019/01/07/transfer-movers-madina-furniture/ شركة نقل عفش بالمدينة المنورة
http://fullservicelavoro.com/2019/01/07/transfer-movers-khamis-mushait-furniture/ شركة نقل عفش بخميس مشيط
http://fullservicelavoro.com/2019/01/09/transfer-movers-abha-furniture/ شركة نقل اثاث بابها
http://fullservicelavoro.com/2019/01/07/transfer-movers-najran-furniture/ شركة نقل عفش بنجران
http://fullservicelavoro.com/2019/01/16/transfer-movers-hail-furniture/ ِشركة نقل عفش بحائل
http://fullservicelavoro.com/2019/01/16/transfer-movers-qassim-furniture/ شركة نقل عفش بالقصيم
http://fullservicelavoro.com/2019/02/02/transfer-movers-furniture-in-bahaa/ شركة نقل عفش بالباحة
http://fullservicelavoro.com/2019/01/13/transfer-movers-yanbu-furniture/ شركة نقل عفش بينبع
http://fullservicelavoro.com/2019/01/18/%d8%af%d9%8a%d9%86%d8%a7-%d9%86%d9%82%d9%84-%d8%b9%d9%81%d8%b4-%d8%a8%d8%a7%d8%a8%d9%87%d8%a7/ دينا نقل عفش بابها
http://fullservicelavoro.com/2019/01/13/%D9%86%D9%82%D9%84-%D8%A7%D9%84%D8%A7%D8%AB%D8%A7%D8%AB-%D8%A8%D8%A7%D9%84%D9%85%D8%AF%D9%8A%D9%86%D8%A9-%D8%A7%D9%84%D9%85%D9%86%D9%88%D8%B1%D8%A9-%D8%A7%D9%87%D9%85-%D8%B4%D8%B1%D9%83%D8%A7%D8%AA/ نقل الاثاث بالمدينة المنورة
http://fullservicelavoro.com/2019/01/12/%D8%A7%D8%B1%D8%AE%D8%B5-%D8%B4%D8%B1%D9%83%D8%A9-%D9%86%D9%82%D9%84-%D8%B9%D9%81%D8%B4-%D8%A8%D9%85%D9%83%D8%A9/ ارخص شركة نقل عفش بمكة
http://fullservicelavoro.com/2019/01/07/transfer-movers-elkharj-furniture/ شركة نقل عفش بالخرج
http://fullservicelavoro.com/2019/01/07/transfer-movers-baqaa-furniture/ شركة نقل عفش بالبقعاء
http://fullservicelavoro.com/2019/02/05/transfer-furniture-in-jazan/ شركة نقل عفش بجازان

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شحن من السعودية لمصر link
1/1/2021 11:07:46 am

https://www.alshimaa.com مكتب الشيماء للشحن
https://www.alshimaa.com/2019/12/Shipping-from-Saudi-Arabia-to-Egypt.html شركة شحن من السعودية الى مصر
https://www.alshimaa.com/2019/12/Shipping-from-Riyadh-to-Egypt.html شركة شحن من الرياض الى مصر
https://www.alshimaa.com/2019/12/Shipping-from-Khobar-to-Egypt.html شركة شحن من الخبر الى مصر
https://www.alshimaa.com/2019/12/Shipping-from-Al-Kharj-to-Egypt.html شركة شحن من الخرج الى مصر
https://www.alshimaa.com/2020/02/Shipping-from-Dammam-to-Egypt.html شركة شحن من الدمام لمصر
https://www.alshimaa.com/2019/12/Shipping-from-Al-Quwayiyah-to-Egypt.html شركة شحن من القويعية الى مصر
https://www.alshimaa.com/2019/12/Shipping-from-Al-Muzahmiyah-to-Egypt.html شركة شحن من المزاحمية الى مصر
https://www.alshimaa.com/2020/01/Shipping-from-Al-Majmah-to-Egypt.html شركة شحن من المجمعة الى مصر
https://www.alshimaa.com/2020/01/Shipping-from-Al-Aflaj-to-Egypt.html شركة شحن من الافلاج الى مصر
https://www.alshimaa.com/2020/01/Shipping-from-Aldawmy-to-Egypt.html شركة شحن من الدوادمى الى مصر
https://www.alshimaa.com/2019/12/Saudi-Arabia-to-Egypt.html شحن من السعودية لمصر
https://www.facebook.com/102683971237227 شركة شحن من السعودية لمصر

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شركة نقل عفش بالرياض link
3/9/2021 04:56:59 pm

شركة نقل عفش بالرياض https://www.shipping-sa.com/2011/11/Transfer-Furniture-Riyadh.html
فك تركيب تغليف ضمان عمالة ماهرة مدربة افضل سيارات لنقل الاثاث خبرة السنين ننقلها اليكم يمكنك الان نقل الاثاث مع شركة المتميزون VIP التى تقدم خدمات نقل العفش اليكم داخل وخارج مدينة الرياض بخصومات فورية عند التواصل معنا شمال الرياض جنوب الرياض غرب الرياض شرق الرياض وهى افضل و اسرع و ارخص شركة نقل اثاث بالرياض

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شركة نقل عفش بالطائف link
6/6/2021 07:04:33 am

https://www.al-kauther.com شركة الكوثر
https://www.al-kauther.com/2020/03/transfer-furniture-in-jeddah.html شركة نقل عفش بجدة
https://www.al-kauther.com/2020/02/moving-shipping.html شركة نقل عفش بالطائف
https://www.al-kauther.com/2018/10/in-kedmetk.html شركة نقل عفش بمكة
https://www.al-kauther.com/2021/05/KSA-moving-furniture-al-dammam.html شركة نقل عفش بالدمام
https://www.al-kauther.com/2021/03/Transfer-Furniture-in-alMadina-alMonawara.html شركة نقل عفش بالمدينة المنورة
https://www.al-kauther.com/2020/12/KSA-moving-furniture-al-riyadh.html شركة نقل عفش بالرياض
https://www.al-kauther.com/2020/10/cleaning.houses.Jeddah.html شركة تنظيف بجدة
https://www.al-kauther.com/2020/10/pest-control-spraying-insecticide-jeddah.html مكافحة حشرات رش مبيدات بجدة
https://www.al-kauther.com/2020/10/Isolation-Tank-Jeddah.html شركة تنظيف خزانات بجدة
https://www.al-kauther.com/2021/02/Electrician-in-Jeddah.html كهربائى بجدة
https://www.al-kauther.com/2021/03/Electrician-in-Khamis-Mushait.html كهربائى بخميس مشيط
https://www.al-kauther.com/2021/02/Plumber-in-Jeddah.html سباك بجدة
https://www.al-kauther.com/2021/02/air-condition-cleaning-in-jeddah.html صيانة وتركيب مكيفات بجدة

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