Blossom Ball 2009- Frances and Celina Reagan

Blossom Ball 2009- Frances and Celina Reagan

Frances Reagan:  Thank you and good evening.  I am Frances Reagan and this is my identical twin sister Celina.  As twins my sister and I have many similarities.  Some obvious, others less so.  Like the fact that we have _ lawyers, we both have been diagnosed of endometriosis.  This fact highlights a troubling characteristic of this disease.  It is hereditary nature.  When a woman is asked to give a family medical history, heart disease, cancer, diabetes, these are medical conditions that typically come to mind.  Rarely a non-cancer Gyn issue is ever raised.  While the impact of endometriosis on a woman’s life can also be as emotionally and physically devastating as its better known hereditary conditions.  Tragically few women have ever heard of this disease, much less know that it is important part of their family life history.  More so than probably any other aspect of our health, we rely on women in our lives and in our families, our mothers, our sisters, our grand mothers and aunts to inform and advise us as to how our bodies work.

Sadly, the women in her life can willingly perpetuate myths about pain and set unusual expectation as to what is normal.  In fact I took a strange bit of pride in sharing my mother’s high threshold for pain and my ability to puff it out as traits that it certainly will in my career, unfortunately they do not serve me well in my personal life.  It is only when the physical pain that I had experienced on a monthly basis had become coupled with the emotional pain that was brought on by my inability to become pregnant with my first child that I began to suspect that what I had considered typical and acceptable was not that.  I was fortunate however to have had a doctor who was knowledgeable enough to recognize that the agony that I had pushed through and pushed myself to persevere through and accept as part of my life as a woman was not normal and should not be tolerated.

It was thanks to Dr. Seckin's accurate diagnosis and his surgical intervention that my endometriosis has been successfully treated.  I look back in sheer amazement as to how I thought accepting physical torment and other symptoms of endometriosis was ever okay.  Because I received an appropriate diagnosis and care, I was blessed to have given birth to a daughter of my own, a few months ago, and I am so grateful that my diagnosis put a name on the pain and the symptoms that I had believed were a natural and normal part of being a woman.  I am so happy and so pleased to know that the work that this foundation will be doing will mean that my daughter will not have to one day suffer unnecessarily.  Thank you.

Celina Reagan:  _ obviously we have some similarities but _ little bit not the hereditary nature.  I am going to talk a little bit about this disease impact on fertility.  Unlike many of the women that are here tonight, my story is not a frustrating odyssey of misdiagnosis.  Rather my story is about optimism and the importance of early detection and treatment of endometriosis.  I have been a patient of Dr. Seckin for 15 years.  Shortly after one of my first visit, he quickly ascertained that I likely had endometriosis.  I had never heard of this disease.  I considered my intense monthly pain normal and just missed Dr. Seckin as a cut happy surgeon.  After a few more years, a little research and with no prospect for a suitable husband in sight, I agreed to have the laparoscopy in order to alleviate my monthly pain and more importantly for me to stave off the effect of the disease that it would have on my fertility.  Well, past more 10 years newly married, thanks Steve and hoping to start a family at age 40 mind you, Dr. Seckin knowing my history and the severity of my disease suggested another laparoscopy.  The surgery confirmed that the endometriosis had aggressively returned.  At age 40, while other doctors would have been negative on my chances of conceiving or would have pushed me right towards IVF, Dr. Seckin had a "can do" attitude when it comes to this disease and today I am a proud mom of a beautiful seven month old baby boy.  _ three months apart.  _ that the menstrual pain is a necessary evil that must by tolerated.  No one ever heard the young woman complain of weird menstrual cramps and say, quit, get a medical assistance, this is a matter of life and death.  In many ways while endometriosis is not terminal, it is about life and death.  Living a full and pain free life everyday is something everyone deserves, and the death of a dream is a great tragedy.  Perhaps one of the most simple, yet most pervasive _ of any woman is motherhood.

Yet month after month, without her knowledge that dream is fully eroded.  As we go through our life, to high school, college, pass grad school, start a career, we hope to meet our husband and start a family.  For many women like me were not positioned to think about starting a family until well into our 30s.  I was a sportswoman, I had a doctor who recognized my symptoms early on and treated me appropriately and aggressively, which allowed me with some help from my husband at age 41 to give birth to my son Connor and my twin sister as she mentioned two months later to give birth to her daughter.  I have had many friends who have had gone through the anguish of infertility issue, insemination, clomid IVF.  Yes when I asked them if their doctor has ruled out endometriosis, they very often have never heard of this or the doctor has dismissed it outright.  This ignorance really does need to be eradicated and women need to be informed properly and timely diagnosed and treated appropriately so they can live pain free life and have a chance of their dream of a family come to life.  Thank you and thank you to Padma Laksmi and Dr. Seckin to bring out the truth.