The FDA has approved an oral treatment to help people diagnosed with a rare overgrowth disease. Oregon resident, Stacey Hardin says news about the therapeutic advancement is “huge” and could mean an end to painful injections for people with Acromegaly.
“I’m pretty excited about this because that’s a good option for me,” Hardin said.
At 19-years-old, Hardin was diagnosed with Acromegaly– a rare hormonal disorder that is known for having also impacted André the Giant and causing enlargement of hands, feet, face, and internal organs in patients.
“I’m actually one of the youngest documented cases,” Hardin said. “I just had this big what they call a macroadenoma in my head and it was smashing the pituitary.”
Hardin underwent two surgeries and had been given radiation therapy, but for more than a decade she still had to be given injections to treat her symptoms.
“So with Acromegaly, it does tend to give you thicker skin… so the once a month injections that I was getting are an 18 gauge needle– so basically you feel like you’re harpooning yourself,” she said. “I remember the first one felt like I was just screw driving the needle in trying to get it in and I was like I can’t do this.”
Now there is an alternative treatment that can eliminate the need for those painful injections. The new FDA- approved prescription medicine called, “MYCAPSSA,” is the first and only oral drug that can be used to help control the overproduction of growth hormones.
“Acromegaly is the disease caused by growth hormone excess most of the time coming from a pituitary adenoma (benign tumor) .. and it’s manifesting with headache, sweating, sleep apnea, acral changes and a lot of other enlargements of organs-,” Director of OHSU’s Pituitary Center, Dr. Maria Fleseriu said.
Dr. Fleseriu says Acromegaly impacts approximately 25,000 people in the U.S., and adds that the first step in therapy is surgery to remove the benign tumor. But, like in Hardin’s case, that doesn’t always work for everyone and the body can still continue to produce too much growth hormones even after the procedure.
“If the tumor is larger, then surgery is not going to work… it’s going to do some debulking — but some cells will be left behind and then the patients will need medication for the rest of their life,” Dr. Fleseriu added.
It’s been 18-years since Hardin was diagnosed with with Acromegaly. Currently, she says she is not taking any injections to treat the disease, but will soon have her growth hormone levels checked to see if she needs to go back on that medication. If she does, Hardin says she is glad to know there will be an alternative treatment option available– no needles necessary.
“An oral medication — I mean a freedom that you can have with that– I don’t have to worry about that month coming up, making sure to bring it [injections] with me and finding someone to give it to me,” Hardin said.
For more information about Chiasma’s MYCAPSSA® (Octreotide) Capsules, click here.
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