My Name Is

My Name Is: Evelyn Jacobucci

Mother and porphyria patient

Posted 10/10/17

About me

I was born in Rocky Ford, Colorado, and spent kindergarten through second grade in the small town of Swink. We moved to the area when I was eight, and went to Beth Eden Baptist for a little, and then was homeschooled from fourth grade …

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My Name Is

My Name Is: Evelyn Jacobucci

Mother and porphyria patient

Posted

About me

I was born in Rocky Ford, Colorado, and spent kindergarten through second grade in the small town of Swink. We moved to the area when I was eight, and went to Beth Eden Baptist for a little, and then was homeschooled from fourth grade on.

I’ve worked since I was about 14 years old, but when 9/11 happened, I felt strongly about doing something for the government. I went to work for the Department of Homeland Security and wanted to join the air marshal program, when I got sick.

My diagnosis

I was diagnosed with acute intermittent porphyrias at the end of 2009, early 2010.

I was going back and forth a lot between doctors’ offices and labs at the time, but I’d been getting major headaches when I was young, and no one could tell me why it was happening. I was also having incredibly bad abdominal pain, my extremities felt really heavy, and I was vomiting and getting fevers out of nowhere. Then I started passing out at work.

Doctors ran every test they could think of, and couldn’t find anything. During one of my trips to the emergency room, someone said I might have porphyrias, and should get it tested at my doctor’s. At the time he laughed at me and said I couldn’t have it, because it’s so rare, but they went ahead and tested me, and sure enough, I had it. My doctor pulled me aside and apologized for laughing, it’s just that he had never seen the disease before.

Living with porphyria

It’s a bull, and totally life changing. It’s genetic, and I was adopted, so I didn’t have a lot of family history information. Once I was diagnosed, I spoke to the two half-sisters I do have, and they both have it as well. Apparently its more common in women than men.

There’s a lot of chronic pain, but it mimics a lot of diseases like Irritable Bowel Syndrome and Crohn’s Disease. When the pain gets so excruciatingly bad, you can’t even think straight. The mental fog it throws you in can be so frightening.

There’s no cure for it, and it looks pretty scary on paper. I get glucose treatments, have a heavy carbohydrate diet, take pain medication and have a home nurse who comes in. Last year I was in the hospital 70 times.

Living with it is a whole different ball game. I had to quit my job, which is hard, because I’m a single mother with four kids, ages 4 to 14. It’s a struggle every day, but you make it through. The nursing care I’ve gotten has been great, and I don’t consider the doctor and nurses just that — they’re family. That relieves a lot of the stress and pressure, which can cause flare ups.

Getting the word out

A lot of the reason I decided to share my story is to raise awareness. I truly believe if I could have caught it early, I might have been able to prevent some of the chronic symptoms. Since the disease is genetic, I’m also doing this for my children. There is hope for the future, with potential treatment and cures out there.

Porphyria isn’t as rare as one might think, it’s just rarely diagnosed. So I tell people to educate themselves and be their own advocates. There are amazing support groups on Facebook, and more people can be helped.

If you have suggestions for My Name Is ..., contact Clarke Reader at creader@coloradocommunitymedia.com.

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