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Another DES Son speaks out and tells his story…
Hello I’m a 58 year old male to female transsexual whose mother took DES following two miscarriages. I first learned about DES in 1989 during a seminar on Clear Cell Carcinoma. I worked as a Registered Histologist, Cytologist, and Pathologist Assistant for 18 years in Histopathology and we were baffled by clear cell PAP smears showing up. It’s a rare cancer of the vagina. Besides being Trans, I was diagnosed with Hypogonadic Hypogonadism at the young age of 35 which baffled my endocrinologist why it was showing up at such a young age. I was clinically sterile by age 37 despite fathering two children just a few years previously. I also have juvenile diabetes Type 1 and hypothyroidism. From my own research, I firmly believe my hypogonadism and transsexuality is due to the DES prescribed my mother in 1954 during her pegnancy with me. I have fought gender identity issues since I was 5 years old and it has been hell living everyday with it. So far all the research has been directed at DES daughters, but we DES son’s have been effected with serious complications in our lives. I feel that more effort needs to be directed towards the son’s. Thank you Kathryn
A Courageous DES Son’s Story….
After 49 years of my life, I sat back and took inventory. This is when I put all the pieces together and remembered talks with my Mother from 40 years prior. I became overly interested in finding out all I could regarding DES. That was over a year ago, after contacting several interest groups and attorneys looking for DES information. I finally came to realize that nobody really was concerned about the DES Sons but only the Daughters. At least I did get answers to things that I had blamed myself for, for so very long. I did nothing wrong, nor did our Mother. She was only following the advice of a doctor. As far as I know, that is what we are all taught to do.
My Mother had 2 miscarriage’s after having my Brother born 5 years before I was born. I remember some time when DES was in the news, I asked Her if She had taken the drug. She got VERY upset with me and told me about the miscarriages, “if I would not have gone to the doctor every week and got shots YOU wouldn’t be here!” That was the only time we ever spoke of it.
I was born in 1963, at birth it was noted that I had undescended testicles. My parents were informed to bring me back after 6 months and at that time they would perform the surgery. 12 years later I was old enough to know something wasn’t right. I asked my Dad if His “area” was the same. I got a very strong “NO!”. Later after my Folks talked, they said I needed to see a Dr. because I was supposed to have this corrected when I was a baby. It is called it a bio lateral orthopectus…excuse the spelling. That was done at age 12.
As soon as I completed high school, I went in to the Military. I was 18 and looked 12 to 13 years old. After my first tour I reenlisted. At 5 years in the U.S.Navy I was an E-5, I was a non-commissioned officer. I had approx. 30 men that worked for me. Again, I don’t even shave yet…. For those who don’t know what the living quarters are like onboard a ship… let’s just say there is no privacy AT ALL. Now I’m about 23 to 25 years old. Still maybe 15% into puberty, Showering, changing clothes…. People whispering.
It forces me to become the meanest Leading Petty Officer to overcome the daily challenges of authority/leadership.
At age 32 I had a Navy medical officer ask if I was dyslexic? I told him that I had know idea (I was always told that I was lazy and did not apply myself) . After giving me a battery of tests the Dr. said I was extremely dyslexic and after talking a while and explaining my issues regarding puberty. The Doctor wanted to send me to the Naval hospital for more tests. I had an appointment with the head of Endocrinology. After several more tests, I was to meet up with the Navy Capt. for the results. I was diagnosed with Kallmann’s syndrome. I needed to receive shots of testosterone every 2 weeks for the rest of my life because my body was not making any.
At that time, age 32 I was still getting carded (ID’d) EVERY TIME. 10 years later…. I now look like I’m 45 to 55 years old, my weight and body mass had doubled. For the first 3 years I had to self inject testosterone into the butt while looking in a mirror. Not an easy task, not to mention that I wanted to get back at so many people for being flat out mean to me. So I was using more of the testosterone and going to the base gym daily.
I retired from the service in 2001. Now I was on patches for testosterone replacement and my levels were normal.
I started to look into “why” and the more of the onion that I peeled back the more it was making since. Undescened testicles, anemic, endocrine disrupting problems, dyslexic, hypogonadism, urethral meatal stenosis, extreme depression, Kallann’s syndrome, AADDS and also left handed. All symptom’s related to DES exposure.
This is a quick overview of what I have found out regarding DES. I would like to also add that in my investigation, that my younger Sister is also a surviving from DES exposure. She too has a long list of issues related to DES exposure.
The DES Tragedy takes many forms……
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Judge Bowler has ordered the parties to attend a mediation session on June 28, 2013 at 10:00 am. With the Motion for Expedited, Consolidated Trial still pending, the Defendants are expected to return in June with a final response to the Court’s guidance to mediate the DES breast cancer cases in good faith.
In the District of Columbia Superior Court, a trial date has been set on January 21, 2014 for the DES breast cancer case of Litterilla v. Eli Lilly and Klein-Connolly v. Eli Lilly. A Frye motion, which challenges the scientific validity of the Plaintiffs’ expert opinions and methodology, is anticipated to be filed by Defendant Eli Lilly and Bristol-Myers Squibb on July 10, 2013.
Mother’s Day is always a difficult day for many DES Mothers and Daughters — and Eli Lilly is to blame for that.
It is time for Eli Lilly to do the following:
1. Make a formal apology for the DES drug disaster.
2. Follow through on their (good-faith) promise to settle the remaining cancer cases of DES Daughters who have suffered from breast cancer as a result of DES exposure.
3. Conduct an ongoing public campaign in an effort to reach out to women and men exposed to DES so they can be proactive in advocating for their future health.
4. Similar to the book Eli Lilly published years ago to educate physicians on the “benefits” of prescribing DES to their patients, the Company now needs to publish a book to educate physicians on the side effects associated with being exposed to DES in order to properly care for their DES exposed patients.
Send the tweet below to media and breast cancer influencers ASAP (Twitter addresses listed below, under the two messages):
#EliLilly ruined Mother’s Day for millions but refuses to admit DES breast cancer link. We need #AnswersThatMatter @LillyPad!
Twitter addresses to tweet ASAP:
- WBZ Boston News: @cbsboston
- WCVB-TV Boston: @wcvb
- WHDH Assignment Desk: @deskon7
- Fox 25 News Boston: @fox25news
- Good Morning America: @gma
- The TODAY Show: @thetodayshow
- CBS This Morning: @cbsthismorning
- The View: @theviewtv
- Anderson Cooper 360: @ac360
- The O’Reilly Factor: @oreillyfactor
- ABC Worlds News: @abcworldnews
- CBS Evening News: @cbseveningnews
- NBC Nightly News: @nbcnightlynews
- Top breast cancer influencers’ Twitter addresses are located under their pictures at this link, on the lefthand side of each webpage:http://www.sharecare.com/static/sharecarenow-breast-cancer-top-ten