Kara LeFrance is diagnosed with acromegaly, a rare disease, and she’s been battling it since she was 20 years old. Unfortunately, it took eight years after her first occipital migraine for her to receive her first diagnosis- a prolactin producing macroadenoma located on her pituitary gland. Then, it wasn’t for another two years that she finally received her acromegaly diagnosis.
Unfortunately, a late diagnosis means that she has to live with the damage that was done in those 10 years waiting for answers. She faces migraines, muscle spasms, and small fiber neuropathy, as well as other symptoms. She is in constant pain. The pain, doctors tell her, can’t be eliminated, only managed.
Kara, now 44, feels grateful she’s found something on her own to help with the pain- art. It became a release for her 24 years ago. She explains that it’s meditative. Her favorite thing to paint is natural scenes.
“It is pain medicine, as I forget myself, as I find joy in the glide of the paint on canvas and blending colors, evoking memories.”
How COVID-19 Changed Things
The COVID-19 pandemic has wreaked havoc worldwide. For Kara, it stopped her treatments to help her manage her pain. She was taking a monthly IV treatment called ketamine in combination with massage therapy to find relief. When used together, she relished in 3-4 weeks of greatly reduced pain. With less pain she could also walk easier, which is another form of therapy in and of itself.
She tried ketamine without massages after the shutdown, but only experienced relief for 4 days. Without her standard therapy regime, she experienced new pain in her ribs and back. She explains that she was crippled from March through May, only able to walk. Bending was impossible, as was brushing her hair, and she could only hold a paintbrush for so long.
She is thankful she can still paint at all.
Kara has completed one painting during this time. “Spirituality of the Bee” displays a lone bee perched on a green stem, layered on a Prussian blue background. Kara explains that the paintings not only bring her joy, but joy to those who see them and to her, that is the biggest gift.
Her pain doesn’t allow her to paint everyday. She often has to put her brush down for weeks or even months. But Kara says she does what she can when she can, and loves every moment.
You can read more of Kara’s story here.
Kara has also designed T-shirts in honor of Acromegaly Awareness Day on November 1st!
The T-shirts show the chemical compound for GH, the growth hormone that acromegaly patients have in excess. These shirts are just another way to spread awareness and knowledge of this condition. Medications and procedures for acromegaly have expanded in recent years, but early detection is still a huge issue. There remains to be no cure. With increased awareness we may be able to recognize symptoms sooner, encourage further development of therapies, and work for a cure for this rare disease.
If you are not living in the United States and would like to order a shirt, just contact Kara about shipping.
Kara’s Acromegaly Awareness Day T-shirt campaign lasts until August 28th so don’t wait to view the shirts and make your purchase! If she can raise 100 dollars, she can afford a massage, drastically improving her quality of life for weeks.