Tamer Seckin, MD – Endometriosis Patient Day 2019 – Opening and Welcome

Tamer Seckin, MD – Opening and Welcome of the Endometriosis Patient Day

Patient Awareness Day 2019: HEALTHY MIND & HAPPY PELVIS
Living Your Best Life With Endo
March 10, 2019 (8am – 5pm)
Einhorn Auditorium, Lenox Hill Hospital, New York City
https://www.endofound.org/patientday/2019

I would like to say what a beautiful day, but it’s not that beautiful day we had yesterday. So, it was easier to start yesterday because there was sunshine. When the sun shines, your mind opens up. All the good feelings come back. You get excited. When the sun goes and the rain drops, other [inaudible 00:00:36] opens up. You can’t escape that. We’re simple creatures. I guess that brings us here. It’s all about whoever you or whatever we do; it’s about our feelings, our concept of information that we digest. What brings us today is a disease concept. For some, it is a condition. That’s why we’re here. We want to say, “I don’t care whether it’s a condition or a disease.” That brings you here, and there is, according to those statistics, at least 170-plus, probably 200 million women out there, 10% at least. It’s a huge number.

There good news is, from a more realistic perspective, not everyone has advanced disease. The disease that some of you here, as I recognize faces, [inaudible 00:01:45] multiple, multiple surgeries with major organ removals. Some of you, they say, with so-called little disease have suffered as much as they did when the pain comes and when your quality of life goes down. So, we had great two days. There was scientists, surgeons, patients, and bloggers were here, too. I figured them out. I can tell who’s blogger. But everyone brought their perspective of the concept, but what united us today was … I try to create … Or, this is a theme that was written, but somehow, it’s always neglected in the definition of endometriosis.

As you know, this disease is when a tissue the belongs inside the uterus somehow escapes that area. Instead of having menstruation, it also escapes in other location in the body, and it creates difficulties. It’s a good way of explaining that, but one and most important part that explains the systemic aspect of this is inflammation. When it’s inflammation, we try to look at it as it is millions of chemicals, molecules, that unwanted. The body gives its fight, and it’s there from brain all over. You’re fatigued there. Tiredness is there besides pain. But most of it is this inflammation causes fibrosis, and this fibrosis eventually affects all the organs. And there is multiple organ symptoms.

That’s why the disease rarely gets a diagnosis early. I think, also, on defense of doctors or healthcare providers, everyone wants to help, but they want to … The way they taught us in medical school, you have to listen to patient very carefully. We kind of don’t listen to patient very carefully, and we bring our own opinions there. And care gets diverted to a different area. I think that one of the most important aspects … There’s no test, really, like sonogram, MRI, expensive test, that really tells there’s a problem there because 99% of the time, the disease [inaudible 00:04:20]. It starts with that, and that’s where the symptoms start.

And with sonogram, with other tests, doctors cannot tell this. It’s an algorithm of complaint. We have to hear from patients very clearly and understand that because the patient really tells you the story if you listen to the story. They tell you, “We cannot rush.: There is a huge element when the pain is described, where it is, how it is radiating, when it is coming, how it is coinciding with other aspects [inaudible 00:04:55]. So, we have a huge program, but, overall, we try to do our best to get you a great program here. In the morning session, we’re gonna follow by Dan Martin, [inaudible 00:05:14], Horace [inaudible 00:05:14]. We have Horace coming from France, who deals with the bowel endometriosis a lot.

He will tell you how he manages Frenchwomen. Whether it’s different or not, we’ll hear. Dan Martin, I think, will give very entertaining subject to talk about tomatoes, placebos, [inaudible 00:05:36], and theories. So, before that, Dan, I’d like to introduce a couple … I like to remember a patient who had surgery two weeks ago. There’s a sweet poem she has written. I thought, for the start of today, that poem should be shared, and I’ll invite Mina to read this poem. By the way, Mina is my daughter.

Hi. I’m a writer, so they thought I was fit for this task, which I’m honored to do. Megan is recovering from recent surgery, so I’m honored to give voice to her experience. “Reverie” by Megan [inaudible 00:06:21].

I have been one informed with pain. I have reached in fright and wilted in fright. And I have outreached my own mind’s disdain. I have looked towards the sky for a light. I have watched as my closed eyelids turned red from fingers pressing, unaware of their heaviest spite. And I have stood upon the tallest mountain and stopped the grace of wind, when, faraway, a newborn’s first breath of air came over jagged peaks from another, watching with tears that brimmed. But not of sadness or filial steam, and sweeter still in maternal rapture, one baby girl, against cradled hands agleam, proclaiming the birth of life no longer with constrain. I have been one informed with pain.

Thank you. That was “Reverie” by Megan [inaudible 00:07:18].

As we wish for a speedy recovery for Megan, I also want to share the artist who created those beautiful pictures in the back. They came from a gallery in Colorado only for this event, and she is Daisy Patton. Daisy defaces the old photographs and brings life. Though they are like part of us, they are extensions. They are [inaudible 00:07:51], but their children are God-knows-where. They are living, but of all, it reminds us who we are.

There’s something about the original photograph that has this sort of energy or aura of the original person that I think is in the painting itself. We’re always trying to understand someone else as a way of understanding ourselves, and so I think that, even though these family photographs are not our own family photographs, there’s still this sort of universal aspect of humanness that comes across. Anthropologist whose name is Michael Taussig talks about sacred objects being shocked back into being when they’re being defaced, and so I think about the family photograph in that context, where it is an object that is ubiquitous. But, by defacing them in a particular way, suddenly they’re piercing and present again. We’re sort of honoring them in a way that the original image intended.

I’m collecting these abandoned family photographs. It is a very particular process in terms of how I’m selecting the images. It has to be this sort of almost falling in love with them. Pattern is another toolkit within this element of defacement; it will underline relationships that are already existing within the photograph itself, so, for example, in the painting “Leonar 5746,” I’m intervening by incorporating pattern that emerges from that field of daisies and then encircles and underlines the relationship with these women. When you think about a photograph, it’s of a split-second.

Barth talks about photography as a representation of death, death of a moment, whereas with painting, time almost doesn’t exist, and so I like the idea of elongating the moment that the photograph initially represented with paint.

So, we will continue with Dan Martin opening with the opening presentation. Again, thank you very much. If it wasn’t for the patient, we would not be here. Thank you for the support. We love you. Dan, come.