Islets of Hope About Lahle A. Wolfe
Founder's 15 Minutes of Fame
Woman's Day, July 2, 2002 Edition, story on Lahle Henninger. PCOSA News; From: Sonnet@obgyn.new Mon, 24 Jun 2002 19:57:51 -0500 (CDT). On newsstands now in most states is the July 2nd issue of Woman's World which features an article on fellow PCOSer, Lahle Henninger. Lahle has been active with PCOSA for several years and has served as Board Member, Director Of Online Community Services, Lifestyles News Editor, and creator of the ED list. The article covers her personal story of how her dramatic lifestyle changes through low-carb dieting resulted in her substantial weight loss and ended her years of infertility and other health complications. In fact, Lahle will be guest hosting the low-carb list this week so if you want to chat with her drop her a line through the LowCarb list. Although the official on-sale date for the July 2nd issue of Woman's World isn't for a few days, a few states already have it on sale. Kudos to Woman's World for yet another great article on PCOS!
A Mysterious Ailment: How to spot a hormonal disorder. By Stacy Colino, WebMd Feature, November 27, 2000. "By the age of 40, Lahle Henninger says she'd had only five naturally occurring menstrual periods in her entire life. She's since had more, but only with the help of hormone supplements. For years, this Virginia mother of four also suffered from excess facial and body hair, severe acne, and tremendous weight gain. What was causing such bodily mayhem? None of the nearly 20 doctors she consulted could come up with a diagnosis, let alone a solution... "
Chicken Soup for the PCOS Soul, article revision, reviewed by Jeannie Brewer.
Stay Fertile Longer, A book by Mary Kittle; pages 252 & 253: What Worked for Us: A Low-Carb Diet Got her Hor- mones Back On Track. Pages 252 & 253. ...Lahle Henninger struggled with life-long weight problems, in addition to embarassing symptoms like acne, balding, and facial hair. She never menstruated....
The Washington Post, Tuesday, April 20, 2004; Page HE01. By Stacey Colino. No Longer A Mere Nuisance: As Incidence Rises With Obesity, Medical Community Begins to Take PCOS Seriously. ..."By the time she was diagnosed with PCOS in 1987 -- at the age of 27 -- Henninger had developed fertility problems and diabetes. Because she and her then-husband wanted to start a family, Henninger took the fertility drug Clomid off and on for three years. "The doctors had me on the highest doses, and it just didn't work," she recalled. So the couple adopted three children..."
The " Miracle Four " and Lahle
Meet the founder of Islets of Hope, Lahle Wolfe
About Lahle Wolfe
Almost ten years ago I made my presence known on the Internet because of my work for women’s health advocacy. I served as a board member, then later as director of online community services for the internationally known Polycystic Ovarian Syndrome Association (PCOSA) and began (and still maintain) a support group for women with PCOS and diabetes who developed eating disorders as a result of a medical necessity to adhere to strict dietary guidelines. During this time I was still married using the name Lahle Henninger. For this reason Internet references, magazine, books, and newspapers where I am mentioned refer to me by “Henninger.” Today, now single, I go by my maiden name, "Wolfe."
In the late 1980s I was diagnosed with Stein Levinthal Syndrome (now called polycystic ovarian syndrome, or, PCOS) and not long afterward developed type 2 diabetes. A few years later I was also diagnosed with Hashimoto’s thyroiditis. During this time, I was morbidly obese. Not pleasantly plump. Not chubby, not even a "BBW." I was fat.
Changes (287 lbs)
In the beginning, I met few compassionate doctors when it came to my weight issues. And none who offered me much in the way of medical information to help me take steps to get my health problems back under control. “Here’s a (low-fat, high-carb) diet. Follow it. If you’re fat, it’s your fault.” I was told this over and over and over again even though I was living on less than 1,000 calories a day and gaining weight at an astonishing rate. Back then, very little was known about PCOS and not one of the more than twenty doctors I saw even had another patient with this wicked syndrome. The Internet was not yet on fire so I scoured every book store and magazine rack within a 50 mile radius looking for information about PCOS. I found very little information and felt very alone often wondering if I was the only one with this medical problems.
In 1995 I contracted Lyme disease. It left me crippled with Lyme arthritis, severe asthma and angina. At that time my diabetes was wildly out of control due to an unhealthy lifestyle (honest, I did not know better back then) and my young son would often find me passed out cold in a state of severe hypoglycemia. PCOS had stolen my once trim body and at only 5’5” tall I weighed in at 287 lbs. Unable to walk up a single flight of steps without stopping to gasp for air I felt defeated -- and a good bit of slef-pity. But one night, after a bitter fight with my former husband (the kind with a temper you don't want to be on the wrong side of), I realized that if something happened to me -- and it seemed almost certain given my health -- my son, only 5 years old, would lose his mother and be alone in life without my protection; I had to do something.
I was "forbidden" Internet access so sneaked on late at night when I could. Through the Internet I found other women with PCOS chatting in small email support groups. I could not believe how, after so many years of social and emotional isolation, my world instantly opened up! There were women just like me after all!
We shared anything and everything we heard of, read about, or learned via the grapevine about PCOS. We even made stuff up like the term "Cysters." About this time, a friend of mine (who shall go nameless) working for the NIH smuggled me out a copy of a very lengthy, long-term study on PCOS – a study that had ended ten years prior. I learned it was not a gynecological disorder as I had been told, but more important, that it was not my fault – I did not get PCOS because I let myself get fat; PCOS, not properly treated, had made me obese. I had become type 2 because I never received proper medical care or advice and because PCOS, untreated, had simply followed its natural progression from insulin resistant (a term my doctors had never even used) to onset of type 2 diabetes.
Had I been given the information in that 313 page NIH report sooner, while still prediabetic, I might have been able to make changes that would have prevented full onset of diabetes. It was too late for me, but I resolved to try and get the word out about PCOS and diabetes – and have done just that for the past eleven years.
This brings me back to the importance and power of online discussion groups. Even after I knew what was happening to my body I still needed solutions. From other women with PCOS and diabetes I learned about lifestyle modification, how to choose carbohydrates wisely, and dropped the high-carb plan my doctor had put me on and lost 135 lbs in 13 months (9 years later I am still at a normal weight). Empowered, I began to exercise, educate myself even more, and felt for the first time that I was finally in control of my health problems. With renewed self-esteem, and no longer shrouded in shame and quilt, I even found the strength to end a violent marriage that never should have lasted for 20 years.
What I have been able to accomplish in the PCOS community, I would like to repeat and do even better in the diabetes community. I have a lot more at stake now -- my daughter is type 1 and I want the world to hear the collective voice of the more than 18 million Americans with diabetes -- because one of those voices belongs to Elizabeth Rose, my child. We want answers in our children's life time; better antidiscrimination laws, reasonable and mandatory insurance coverage, and will no longer be content to sit on the back burner of politics or in the medical and scientific world while the diabetes snake oil industry grows rich of the backs of desperate people with diabetes who spend over a 100 million dollars each year buying diabetes "cures."
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I would like to tell you that I graduated Harvard, drive a Lexus and never shop at Wal-Mart: The truth is that I have a high school GED, drive a beat-up, used van that gets an impressive ten miles to the gallon (a tune up did not help) and clip coupons that I use -- yes, even at Wal-Mart. But I am not ashamed of my life or myself, including my shortcomings as a webdesigner. In fact, what you see here on this website is courtesty of a crash course by "HTML for Dummies." Prior to Islets of Hope I had no programming experience, only a rabid desire to become one of the "feet" kicking diabetes in the ..."
But I can tell you that I am the proud mother of four fantastic children, three of whom I was blessed with via adoption, and my fourth, Elizabeth, by an unexpected, unplanned miracle. I can stay up all night checking blood sugars and still get up smiling each morning and meet the needs of my family which includes two cats, a crazy dog, and countless fish. Occasionally, I even find time for my own needs. Well, at least it is penciled on my calendar for next week to tend to myself, which should count for something. And anyone who parents a child with diabetes knows exactly what I am talking about.
I can also tell you that with your involvement we can turn the tables on diabetes just as we did PCOS – a syndrome once almost unheard of that now almost any endocrinologist understands and can diagnose and treat effectively. I cannot encourage you strongly enough to get involved in an online discussion group, blog, or forum and a face-to-face support group. Do it at IOH or do it elsewhere but please get involved. Talking about your ups and downs or, in our case, the "highs" and "lows" of diabetes (and life) really helps. If it were not for what I learned on the Internet from others – how lose weight with PCOS and type 2 diabetes and Hashimoto’s – there is no doubt I would have died years ago from heart problems.
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When Elizabeth was diagnosed with type 1 diabetes I was raising four young children alone attending nursing school. One might think someone interested in nursing, already a diabetic would have a good understanding of type 1 diabetes. Not so. I really had little understanding of how different Elizabeth’s diabetes was from my own. So once again, I turned to the Internet and happened upon the most amazing support group for diabetes in Northern Virginia run by Nancy Sharma. Now, I host my own diabetes support groups but I have also included more than 10,000 outside links to other places to turn for information and support. Hey, if I had all the answers my checkbook would balance and none of us would have cellulite or diabetes. The important thing is not where you get involved, but simply that you do get involved.
So please, use the Internet as a tool; a resource. You may be surprised at what you can learn (and it is not all bad). Discuss what you learn with your doctor before making changes but don't assume doctors will offer you every bit of their knowledge about diabetes and you care at each visit. You need to become a responsible, self-advocate and ask questions.
By joining online groups you will make friends and connect with other people who walk in your therapeutic shoes with the same neuropathy that you do. That is not to say a person has to be diabetic to care, but you do have to be living with diabetes to “know.” And believe me, I know, and that is why there is an Islets of Hope for persons with diabetes.
Lahle Wolfe, Founder, Islets of Hope
"Character may be manifested in the great moments, but it is made in the small ones."
– Phillips Brooks, American Clergyman, best-known for composing "O Little Town of Bethlehem"
If you are obese, don't get overwhelmed with feeling that you have to lose a huge amount of weight to make a healthy difference. Even just reducing excess body weight by only 10-15 lbs greatly improves longevity, fertility, and insulin sensitivity.
Page Updated 05/01/2006