Video - Medical Conference - Lone Hummelshoj
So let’s start, we have a great program divided in four sections, the first section is the science of stem cells, Protenomics, and obviously we will speak first about the who is this women with Lone. I like to invite Lone Hummelshoj from London, the President of World Endometriosis Society and Director. Lone?
Lone Hummelshoj
Good morning ladies and gentlemen, Dr. Seckin has asked me very briefly to just talk about who the women with endometriosis is so we can set the scene for today. A 2008 consortium workshop concluded or agreed that we are talking around 10% of women during the reproductive years. I decided to find out what that actually means. According to the World Bank, there are one billion seven hundred and sixty one million and six hundred eighty seven thousand women in the world between the ages of 15 and 49. If 10% of them have endometriosis we are indeed talking about 176 million women. It turns out or equates to about 7.5 million in the United States, another million in Canada. So Tamer is right we’re talking about 8.5 to 9 million women in North America with endometriosis. Many of these have never been diagnosed and therefore they haven’t been treated. I just want to hammer home this point, it is one in ten that you see walking in the street. If you are looking around an auditorium like this there will be a lot of women with endometriosis and even more so to-date because this meeting is open to women with endometriosis, and I think it is wonderful that we are all coming together to try and commence this dialogue.
So who is this woman? Well, she is somebody who might be in pain and some women are debilitated by that pain. Some can’t have children and some are very, very worried about the long-term effects of this disease. It can affect their education, their careers, their relationships, their quality of life. With that, it’s not just about that women, it is about her friends, her family, her partners, and even her colleagues who are affected by this disease. I am going to be talking about this in more detail later this morning. I think some of the things that we need to address here are to boost surrounding endometriosis. Things like we don’t talk about menstruation, it is just not something that you bring up over breakfast or lunch. When you have to start explaining what this disease is to those who don’t know what.
I told Dr. Seckin that this is way, way too early, thank you. In Europe, we just don’t start early, I mean it’s just, anyway.
So we need to learn to talk about menstruation without sort of climbing in and saying this is a tricky topic. In fact, I spoke with a journalist a couple of years ago because I was trying to get him to do a feature on endometriosis for major English newspaper and he said we don’t do endometriosis, it’s just too tricky. So that’s what we’re dealing with. The other thing of course is sex. That’s not something that we should say out loud either unless it’s perhaps in the gossip magazine and we have to find what the celebrities are doing, but when it effects us it becomes a tricky topic and I will address that later this morning as well.
So, all of this is resulting in as Tamer said delayed diagnosis, delayed treatment and an uncertain prognosis. So I’m not going to go into further detail here, but I do want to call Laura Baldi-Kuhn up to the platform to you.
The Foundation did an essay contest where women were invited to tell their story with endometriosis. It was called 'Take Back the Day 'and Laura was winner of this contest and she is going to read her story. Thank you.