I will start this post by sharing a paragraph straight from the website of the Endometriosis Foundation of America because it sets the stage for me to express my perspective about the claims that are being made by the EFA:Recently, I became aware that Padma Lakshmi (host of Top Chef) and Tamer Seckin, MD have co-founded the Endometriosis Foundation of America (EFA).
Ms. Lakshmi has been interviewed recently and has repeatedly asserted that she is cured of her endometriosis. Apparently, based on these interviews, her EFA Co-Founder (Dr. Seckin) is the one who “cured” her of endometriosis.
There is no cure for endometriosis!That's right. Despite claims made to the contrary, there is no cure for endometriosis. I am sure I can safely speak for endometriosis patients everywhere when I say that such a cure is needed and wanted badly. I would love nothing more than for these claims to be valid. My life and the lives of so many of my friends would improve dramatically. Who wouldn't want to believe that a cure has been found for endometriosis? The fact of the matter is that there is no cure for endometriosis at this time. We look forward with hope to the day when there will be a cure.
According to the Endometriosis Research Center there is no cure for endometriosis:
Here is what their site says:
Is endometriosis curable? There is currently no absolute cure for endometriosis, but there are several methods of treatment, which may alleviate some of the pain and symptoms associated with it.
According to the Endometriosis Association there is no cure for endometriosis:
Here is what their site says:
Although there is no cure for endometriosis, a variety of treatment options exist. Goals may include: relieving/reducing pain symptoms, shrinking or slowing endometrial growths, preserving or restoring fertility, and preventing/delaying recurrence of the disease.
I’ve had endometriosis for 27 years. In that time I’ve heard various myths about things that supposedly cure endometriosis. Here are just a few of the issues I've seen confusion over:
Fact: Hysterectomy is not a cure for endometriosis.
Fact: Those nutritional supplements you see advertised on Google ads (the ones that claim their products cure endometriosis) are not a cure.
Fact: Prescription medications do not cure endometriosis.
Fact: Laparoscopic surgery (whether laser or excision) does not cure endometriosis.
Regarding that last item, the EFA is now asserting on its website that “laparoscopic excision surgery” can cure endometriosis. Excuse me? The EFA is proposing it has found a cure for endo?
Let me repeat this paragraph containing a direct quote from the Endometriosis Foundation of America website. I don't list this to be repetitive but to emphasize what the EFA is claiming:
Endometriosis affects an estimated 89 million women and girls worldwide. In all seriousness, if there were a cure for endometriosis would we be learning about it from the website of a new endometriosis organization and via articles about Padma Lakshmi in gossip magazines?
This would be a massive breakthrough for the medical community. It would be the solution to a problem that has mystified numerous doctors, medical researchers and patients for many, many years.
If there were a cure for endometriosis available right now, wouldn’t it be more likely announced in peer-reviewed articles in medical journals, for example? Wouldn’t endometriosis finally be a top story on the evening news... because a cure had been found for this serious, life-altering illness?
Trust me. I would love nothing more than to believe that there is now a cure available for endometriosis. The reality is that saying something is true doesn’t make it true. The reality is that I have heard enough false cures and myths over the years to know the importance of skepticism, researching things myself, and asking questions.
The EFA is hosting a "Blossom Ball" tonight in New York City. There will be various celebrities there. One can only assume we’ll likely be hearing about this in the mass media (especially given the fact that there have already been stories on national online news/gossip sites). The EFA has a public relations firm handling media matters. So I would expect we’ll be hearing more about this event.
Various celebrities are associated with this event. One person well worth noting when discussing the EFA is Julianne Hough. She is on the EFA's Honorary Committee. For those of you who are not familiar with the significance of Julianne Hough being affiliated with EFA, let me explain.
Last season on Dancing with the Stars, Julianne Hough announced on the show, to tens of millions of viewers, that she has endometriosis and would be undergoing surgery (laparoscopy) the next day. She had not had any previous laparoscopies. So she announced that she had endometriosis BEFORE she was diagnosed by laparoscopy. Endometriosis can only be diagnosed by laparoscopy. That is the definitive method for diagnosis.
While she did go on to have the surgery and her endometriosis was confirmed by laparoscopy, her timing of announcing her endometriosis BEFORE a proper diagnosis caused confusion for endometriosis patients and the public alike. (To compound matters, her Dancing with the Stars co-star Lacey Schwimmer announced within days that she too has endometriosis. She indicated to the press that she didn't require surgery like Julianne because they "caught it early").
During the week that Julianne Hough and Lacey Schwimmer announced their endometriosis diagnoses, my blog had a huge influx of new readers. My traffic meter was filled with searches on Julianne Hough and Lacey Schwimmer. It was also filled with search phrases such as, "How is endometriosis diagnosed?" "Do I need a laparoscopy to be diagnosed?", etc. It was very evident that the media circus surrounding the announcements and interviews regarding Ms. Hough's and Ms. Schwimmer's conditions directly connected to the unique searches that lit up my traffic meter.
I have blogged extensively about the commotion that occurred when Ms. Hough and Ms. Schwimmer announced their endometriosis diagnoses (see related links). The point is that Julianne Hough, however unintentionally it might have been, misinformed millions of people with the combination of her untimely announcement of having endometriosis combined with countless interviews she gave about her surgery and recovery.
EFA asserts on its site that it wishes to address misinformation. Yet they have Julianne Hough sitting on their Honorary Committee. I find this astonishing.
According to the EFA site, the cost for a table at tonight's ball is $6,500. This weekend, EFA updated its site with the following message, "Dinner reservations are near capacity at this time and online registration is now closed for this portion of the event". It sounds like this ball is a successful fundraiser just from the table fees alone.
I can't help but wonder where all of the money will go. What I mean is that I have read through the EFA mission statement and foundation goals for 2009. However, I'm stuck on the fact that part of the EFA site claims that endometriosis is curable and yet the site also says "working towards a permanent cure".
When I read the EFA mission statement, research is mentioned as being one of the EFA's focus areas. I guess I'm having trouble understanding why there would be a need to raise money for research if the condition is already cured.
Seriously, I perceive the compilation of comments on the EFA site as a mixed message.
It is unclear to me at this time exactly where the money from the ball will go and where the donated money (via their website's donation option) will be applied.
If Padma Lakshmi, Co-Founder of the EFA, is telling the press in numerous interviews that she is cured and that Dr. Tamer Seckin is her doctor and if the EFA's own website asserts "the EFA firmly believes that every stage of the disease is treatable and with the correct surgical techniques even curable", then apparently the money raised will not be used to pursue medical research for a cure for endometriosis, right? Why would they need to raise money for a cure if Dr. Seckin has already discovered one and his patient/Co-Founder, Padma Lakshmi, is already cured? Right? I’m being serious. Isn’t that logical?
Wait a moment.
The EFA website also states:
1) Dr. Seckin treats Padma Lakshmi for endometriosis and she claims to the press that she's cured of it.
2) The EFA website of the organization founded by these two individuals says endometriosis is "curable" in one part of the site.
3) However, the EFA website also talks about "working to find a permanent cure" on the very same site.
I want to examine the phrase "permanent cure" for a moment because I think of a cure as being a black and white issue. Either a person is cured or not. Is there such a thing as a temporary cure? Is this a matter of semantics? I seriously don't understand the notion of "working to find a permanent cure" if (according to EFA) endometriosis is already "curable". Is EFA saying endometriosis will be "curable" someday? No. Padma Lakshmi, Co-Founder of EFA, says she already is cured.
EFA's comments from one part of their website to another are inconsistent.
I would like to close by making it very clear that I vigorously support public awareness of endometriosis. What is terribly unfortunate in this case is that the Endometriosis Foundation of America is disseminating misinformation (such as its claim that endometriosis is "curable").
Take one more look at the first sentence from this text off of the Endometriosis Foundation of America site:
Furthermore, disseminating such misinformation is contrary to the EFA’s own statements from its website regarding its intentions. As per the wording from the site above, the Endometriosis Foundation of America's statements indicate, in part, that it wishes to address "misinformation”. Instead, it is spreading it.
Tuesday, October 28, 2008 Endometriosis Blog: Julianne Hough Of Dancing With The Stars Reports She Has Been Diagnosed With Endometriosis & Will Have Appendectomy ***(UPDATED)**
Thursday, October 30, 2008
Endometriosis Blog: Dancing With The Stars' Lacey Schwimmer Reports She Has Been Diagnosed With Endometriosis Too **(UPDATED)**
Friday, October 31, 2008 Endometriosis Blog: PLEASE Sign Petition To "Create Endometriosis Awareness & Understanding"!!! ***(Please read... THIS POST HAS BEEN UPDATED!!!!)***
Friday, November 14, 2008 Endometriosis Blog: "Endochick" Is Today's Guest Blogger On The Topic Of The Endometriosis Awareness Petition and Dancing With The Stars!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.