|FUNdraiser for research! July 26, 2008 Warwick, RI
Click here for full details
|Visit Dr Herbst's
|About Madelung's Disease
|* and related diseases|
|Donate to Dr. Karen Herbst's research via PayPal. Just click the button below. Any donation helps continue research for Madelungs, Dercums and related conditions. Click "Donate" below.|
|First Madelung's Case?
The image to the right is of the Queen of Punt, thought to be the first documented case of this disorder, roughly 35 centuries ago.
(Medical speculation: HERE)
It seems that the condition may stem from impaired ability to make certain digestive enzymes normally secreted by the pancreas. Apparently over time, this leads to other consequences including mitochondrial mutations, and many other serious health concerns. The co-existing conditions vary from patient to patient.
Possible causes seem to include alcohol use, exposure to certain chemicals, heredity, HIV treatment with Protease inhibiting drugs, and steroid use.
Discussion of possible Queen of Punt Syndrome
|The Ancient Egyptian Relief above features the Queen of Punt,
the first documented likely Madelung's victim
Writings indicate she was mummified but the location of her remains is not known
|Madelung's Related Links|
|Want site updates? Email: email@example.com please put
Madelungs Updates in subject line. Thanks!
|An update on Jenny's
People sometimes read archives and email to say things such as "your prospects can't be so bleak now" That's true. Read more about what I'm up to here
|Please donate toward research into Madelung's Disease and Dercum's Disease. Dr Herbst and I have both struggled with "begging" for funding but given current priorities, though there is considerable legislation in place to fund rare disease research it seems that even at a Veteran's Facility, researchers are forced to seek private donations
to continue their work.
Dr Karen Herbst at the VA Medical Center in San Diego is currently working on various research projects to gain further understanding of these disorders. Further understanding will lead to better detection and treatment for all of us living with these conditions. A recent case study by a Dallas Spine doctor stated that Madelung's disease are not directly linked.
To donate: contact Caryl Finch at 858-552-8585 ext 2848 or send a letter with your check indicating you want to donate specifically to Dr Herbst's research through the Veteran's Medical Research Foundation. Please include your name and address as the Foundation will send you a receipt.
The Veteran's Medical Research Foundation is a 501 (c)(3) foundation, therefore
Your donation IS a legal income tax deduction for United States taxpayers
Veteran's Medical Research Foundation
3350 La Jolla Village Dr (151A)
San Diego, CA 92161
858-552-8585 ext 7606
Over the past three years there have been
an astonishing 8,000 plus hits on this website. Considering that some sources have stated there may have been between 200 and 600 cases of this disease in human history, and we know there are roughly 100 of you who have communicated with someone in the Madelung's community as of January 2006, we'd like to establish some demographics.
Can you please email the following data about yourself to firstname.lastname@example.org
*First name and Initial or Last name
*Age at diagnosis
*Condition you have: Madelungs, Dercum's Disease, HIV Lipodystrophy, or any other form of lipodystrophy (please specify which if you have one of the other types)
*Ethnicity (e.g. white, German)
*Where you live (City and State or Country)
*Madelung's patients only: are you taking the Pancreatin Enzymes?
How this information will be used:
We are trying to put a "face" on Madelung's and we will use this data to help us get funding for more research.
|Sometimes you just want to talk to another
person who knows what it's like to live with on
Dercum's Hope has invited all people living with Madelung's,
HIV Lipodystrophy and any other form of Lipodystrophy or Lipomatosis to join them for a chat on Thursdays. Hours vary by week! Visit www.dercumshope.org anytime to check on the next scheduled chat!
|2004 Successful Treatment with Pancreatic Enzymes
MANY people have shown marked improvement
Long range issues balanced diet important. Residual problems
|Visitors since March 20, 2006|
|The old Geocities site had over 8900 hits between March 2003 and March 19, 2006
My deepest gratitude to every person who has expressed an interest in Madelung's and other forms of
Lipodystrophy. We have come a long way but there is a long road ahead.
|Many official North American references on Madelung's suggest this condition is not serious. This is because standard diagnostic tests tend to reveal no indication of any known disease process. The truth is that untreated Madelungs kills. Patients who know or suspect they have Madelung's should not remain in the care of a provider who dismisses their condition as harmless. Delaying
treatment is a bad idea, as the condition may seem harmless at first, but as the disease progresses overall health slowly deteriorates and very few untreated patients have lived beyond their 60's.
|22005 Some really interesting updates. All in one place, click anywhere in this sentence to get to them. Email me with questions or comments.|
|About Madelungs is growing at a steady rate of 1 to 2 first time readers per month. In 2002, when I was diagnosed, there were supposedly 600 total cases, anywhere, ever. Today I know of over 75 US Cases and several more cases throughout the world. Madelung's is among other things, underdiagnosed and poorly documented|
|Journal Before Treatment
Last updated 11 13-2003
|Not so "rare" after all
This condition has several other names
(CLICK HERE TO VIEW OTHER NAMES)
Benign is misleading, and calling the condition anything with lipomatosis in the name is a distraction from the serious underlying metabolic problem which results in both debilitation and death. A number of; Madelungs deaths have been senseless and while they were presumed to be "sudden death; asphyxiations. The author who has heard the details of several of these deaths, strongly suspects that the deaths are more likely due to a form of starvation. It has long been held that Madelung's involves a problem of lipid metabolism, but the author has developed a strong hunch that the real problem is a defect in metabolizing proteins. Most deaths are the result of years of neglect of a metabolic defect that no one has bothered to identify. The condition has been barely acknowledged and the number of cases, as well as their seriousness has been understated. Madelung's is likely a very treatable condition, once the underlying cause of the the metabolic abnromality is identified
|Updated October 20, 2006|
|About Madelungs Copyright J. Mandell
2003 - 200