karenaid's interview


How did all start?

OI, Brittle Bones, is a genetic connective tissue disease. You are born with it. It's about not enough or mutated collagen. Collagen is in everything in the body. It's sort of a misnomer to call OI a "bone disease," because it effects so many things in people who live with OI, but the main symptom of OI is the easy and often fracturing of bones. Right now according to research, and depending on which researcher you ask, there are 10 to 15 different types of OI that vary in symptoms and degrees of severity.

Do you already have a diagnosis? How long did it take you to get it?

I was diagnosed at birth based on several physical/medical and appearance symptoms and based on the fact that it ran in my family, but I did not have a genetic test done until I was 30 years old after my son was born. There are only 2 facilities in the U.S. that clinics can send the genetic test to. I had my test done at the University of Minnesota and they sent it out to wherever it was done. I received my results a few months later. Based on those results, the doctors guestimate that my son has the same type I do.

For what medical specialties have you been treated? What has been the most useful specialty for your?

rheumatology, gynecology, obstetrics, endocrinology, neurology, radiology, internal medicine, ophthalmology, surgery, podiatry, dentistry, otolaryngology, orthopedic, allergist/immunologist/pulmonologist, psychology, chronic pain specialist, physical therapist, occupational therapist. THE most useful thing is finding a medical professional who will actually listen to you/the patient and not think that only he/she/the doctor only knows all the answers and even all the questions!

What has been the most useful thing for you so far?

IF you can, have good medical insurance and do PREVENTATIVE care. I don't, so I only get to do care after I have an injury; hence, chronic pain and lack of mobility. SWIM as often as possible! It's THE best therapy people with OI can do! Building muscle around our bones makes a cushion. Try to have a good flow of communication between your TEAM of healthcare providers and make sure they all know your prescriptions. I keep my own records of everything. That is the most helpful. BE YOUR OWN ADVOCATE!

What have been your biggest difficulties?

Lack of rural healthcare facilities. Lack of rural KNOWLEDGEABLE healthcare providers. Lack of transportation. Lack of medical financial assistance. Lack of family support. Lack of any kind of support network.

How has your social and family environment reacted? Have your social or family relationships changed?

Even having grown up in a family with OI I did not have family support then or as an adult. After having a child with a more severe type of OI my family still wasn't supportive. After I was in an auto accident as an adult and I became disabled AND having a child with special needs I lost most of my friends who just didn't have the time or patience to want to "hear about it." Living in a rural area is very lonely. Online support groups help.

What things have you stopped doing?

Due to a lack of mobility and almost daily chronic pain I lost the ability to work, go out with friends, or really have any kind of social life. I spend most of my time trying to keep the house clean and taking care of my son's medical needs. That's enough to keep my pain levels pretty high, but it's quite boring.

What do you think about the future?

I try to do art sometimes or read. I watch Netflix way too often. If I think of the future too much I get sad or worried. I'm trying not to lose my house now and figure out now bills, so the future just has to wait. Take it one day at a time folks.

So far, which years have been the best years in your life? What have you done during them?

I'm just trying to live one day at a time. Live in the Present Moment. Love myself and love my son. Give thanks for the home, the friends I have, and the life I've got.

What would you like to do if you didn’t have your condition?

Travel. It hurts so much for me to drive. I used to like to just get in the car and go. If even just to go to yard sales or to antique shops all day long; drive around town, or towns, for a day. Now it hurts and I have no money.

If you had to describe your life in a sentence, what would it be?

My life is a winding road through forests and across deep oceans of adventure.

Finally, what advice would you give to a person in a similar situation?

Just keep swimming, just keep swimming!


Aug 8, 2019

By: karenaid

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