Helen MacGregor: America’s Oldest Acromegalic?

Helen Fall 2013 smIn honor of Acromegaly Awareness Day, the Pituitary Network Association decided to check in with the grande dame of our PNA members; Helen MacGregor. Mrs. MacGregor is 90 years young – making her the oldest pituitary patient in the country, to our knowledge, and a true medical miracle.

Helen grew up in Minnesota and spent summers at the family home on Cape Cod. She has degrees from Wellesley and Fuller Theological Seminary. She also took part in the PhD program in archaeology at Johns Hopkins University. She married in 1957, and had two daughters. She taught history and archeology at Macalester College in Saint Paul, Minnesota. Her husband passed away from cancer at the young age of 45.

In 1973, she noticed that her teeth were moving apart, her shoe size went up three sizes and her hands got bigger. Several years later x-rays were done, but misread. So it wasn’t until 14 years later that she landed at Massachusetts General Hospital in Boston, with a diagnosis of acromegaly and Multiple Endocrine Neoplasia type one. Surgeons at Mass General removed her tumor using the transsphenoidal approach in 1987, shortly before her sixtieth birthday. Helen believes she developed Multiple Endocrine Neoplasia (MEN-1) and acromegaly while in her twenties, but was not diagnosed until her thirties. Her acromegaly recurred in the 1990’s but is under control with medication. She had an additional surgery in 2006 on her parathyroids.

Massachusetts General Hospital took a blood sample about 18 months ago and is studying her case. She says researchers there told her that there are three strains of MEN-1 that are known to carry it for the next generation, but her strain is different altogether. She has several benign cysts on her shoulder and forehead and battles osteoarthritis.

Remarkably, she still serves as a senior consultant for a private school she founded 50 years ago, called the Trinity Christian Academy of Cape Cod, in Barnstable, Massachusetts. It’s not far from her home in Brewster, which was built by an ancestor in 1736. Her family history on the Cape goes all the way back to Thomas Clark, who was the first mate on the Mayflower. She loves spending time with her daughters and spending the holidays with her six grandchildren, four boys and two girls. She is looking to the future, hopeful for the chance to meet her great-grandchildren one day.

Helen has always been a cheerleader for the PNA and the PNA for her. She especially wanted to thank the PNA, and founder Robert Knutzen in particular for helping solve a thorny problem with her insurance company years ago. At that time the pharmaceutical industry had just come out with a new shot that you only had to take once a week instead of every 8 hours. She says the insurance company surprised her with the news that they were doing what’s called a planned exclusion, and required her to pay 10 thousand dollars. Helen says Robert Knutzen connected her with another patient whose doctor had gotten the new formulation approved. The insurance company relented and returned that money, 8 months after she had paid the bill.

Since we last spoke five years ago, Helen was diagnosed with Alzheimer’s disease. On the day we spoke, she seemed to be as bright, talkative, cheerful and sharp-witted as ever! Helen says she is very pleased to be involved with the PNA and enjoys helping families who have been affected by pituitary issues. The PNA is honored to spotlight Helen’s amazing life to bring hope to others affected by acromegaly.

 

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