THREE RIVERS, P.E.I. - Anne White does not bemoan being among the extremely few P.E.I. residents living with the rare disease called acromegaly.
She is upbeat, in fact.
The 68-year-old Three Rivers woman was diagnosed in 2015 with this rare hormonal disorder caused by a benign tumor of the pituitary gland in adults.
She has likely had the condition much longer, but the disease often goes undiagnosed. While three to four in one million persons per year are diagnosed with acromegaly, it is actually present in 60 out of one million persons.
White says just over a handful of Islanders are currently diagnosed with the disease.
Acromegaly can be difficult to diagnose because of its slow progression and varied symptoms, which include abnormal growth, swelling of the hands, feet and facial features, increased spacing of teeth, deepening of the voice, headaches and problems with vision.
Watch for signs
Following are some of the symptoms of acromegaly, a hormonal disorder that results from too much growth hormone in the body:
- Changes in facial features
- Enlargement of feet and hands
- Deepening of the voice
- Carpal tunnel syndrome
- Soft tissue swelling
- Tongue thickness
- Protrusion of the jaw
- Excessive sweating
- Joint pain/arthritis
- Teeth gap
- Enlarged organs
White has several of the symptoms.Her feet have grown from size six to size eight. Her hands have also grown much larger.
Her voice has deepened considerably from a previous soprano voice for the professional musician who once taught music in school and still leads choirs.
She also believes carpal tunnel syndrome and arthritis in her right hip can be attributed to acromegaly.
Still, she is fairing very well compared to many others with the disease.
She remains active, walking and swimming on a regular basis.
Her pain is manageable.
And her spirit is high.
“I consider myself very fortunate,’’ she says.
“Some people with acromegaly suffer terrible headaches and terrible pain and discomfort in their joints and various places.’’
She was somewhat jolted by the sight of some members of an acromegaly support group when she first attended the Halifax-based group in late 2015.
She has met people with far more pronounced symptoms, including a man with size 17 feet.
White feels “really motivated’’ to raise awareness of the symptoms, which she is once again doing by telling her personal story.
With Nov. 1 recognized as Acromegaly Awareness Day, White has also been busy distributing awareness posters to doctors’ offices, dentists and health clinics.
As for her own condition, White does not fret over the possibility she may experience more painful or troubling symptoms of the disease.
“I’m an optimist,’’ she says.