How Is Acromegaly Not an Equal Opportunity Experience?

Acromegaly, also called gigantism, is diagnosed in only 1 in 20,000 people in the United States.

In 95% of cases, it’s caused by a benign tumor on the pituitary gland called an adenoma. Acromegaly causes abnormal skeletal growth, the distortion of facial features, and can affect the patient’s heart and respiratory systems.

When diagnosed in its early stages, many of acromegaly’s complications, including the worst of all possible outcomes–an early death–can be avoided.

There is a big difference, however, in how quickly a man with acromegaly is diagnosed compared to the symptoms-to-diagnosis experience of women.

A research article that appears in Pituitary reported on a patient pool of 165 patients who responded to questions regarding their diagnosis experience and how quickly they received treatment. The study also asked the number of specialists who had been consulted by men as opposed to how many had been consulted by women.

The results? Men were generally diagnosed in about 1.6 years and they sought the expertise of 3.4 specialists. Meanwhile, for women, diagnosis took approximately 4 years and they were seen by at least 4 specialists.

What shocked researchers most was the fact that an MRI to diagnose acromegaly is readily available. They believed the diagnosis should have been arrived at much faster.

The patients participating in the study had surgery on their pituitary glands around 5 years from the onset of symptoms. More than a quarter had to cut back on their livelihoods, and for some, acromegaly made them retire earlier than expected.

As a result of this study, it’s become clear that more awareness of acromegaly could assist healthcare providers in diagnosing the condition earlier.

But an insidious secondary finding shows that healthcare providers seem to take women less seriously when they are discussing their symptoms.

Obviously, this is an issue that needs to be addressed within the acromegaly community, but also across all areas of medical care.


 

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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