The family of a woman with Type 1 with a rare condition called Charcot foot has started a GoFundMe fundraiser to help raise money for a custom wheelchair ramp. Via email, we interviewed Ali Dugger about her condition and the campaign on her behalf.
1) Okay, so I know nothing about Charcot foot. What causes it in the small subsection of people with Type 1 diabetes?
Most people, including doctors, know nothing about Charcot foot. It is a very rare complication that affects only 1 percent of people with diabetes, both Type 1 and Type 2. It is a worse case scenario of neuropathy – the immune system attacks the bones in one’s feet, making them as breakable as glass during an “active” episode of the condition. These episodes can hit at any time without warning. Currently there is no cure and many patients end up needing or opting for amputation.
2) It takes a certain personality to be able to effectively confront a later-in-life T1D diagnosis. How did having Type 1 help or not help you mentally in dealing with this new challenge in your life?
Great question and I’m glad you asked. The year prior to my Charcot diagnosis I was diagnosed with several other T1D complications, including retinopathy, gastroparesis, autonomic and peripheral neuropathy, and something called Dupuytren’s contracture, which causes the hands to eventually contract in on themselves like T-Rex claws.
With each diagnosis, which all fell within a month of each other, I fell into despair. It took a lot of inner work and time to accept what was happening to my body and how my future would not be what I had hoped for.
The moment the doctor delivered the news of the Charcot diagnosis, it struck me in the gut. After blinking back the tears, my first thought was, “Thank God I’ve been through all I have this last year. Nothing could have prepared me better for this new chapter in my life.”
I had worked through my depression and gotten back on my feet after nearly a year.
3) Tell me specifically what this fundraiser is for, and how it will improve your quality of life.
My parents bought a home in California to live out their golden years. They never pictured having their 31-year-old daughter becoming wheelchair bound and dependent on them for everything from grocery shopping to laundry. Their home is up a steep canyon wall and was built nearly 100 years ago. The 25 or so steps that wind up the house are ancient and unable to have a typical ramp or chair lift installed. Contractors will have to design a custom ramp for the house to accommodate the property.
Currently, I crawl on all fours wearing gardening knee pads, and fending off our two dogs who think I’m playing a game. Having a ramp will enable me to have more freedom and independence, as well as save me from having a mouth full of tail on a daily basis.
4) Why turn to crowdfunding for this? I assume other avenues have been tried.
My mother is a diabetes educator, and my father works the graveyard shift at UPS. He began working as a loader to provide my brother and me with medical insurance before it was illegal to discriminate against people with pre-existing conditions. I am a former elementary school teacher and currently unable to work due to my complications being somewhat volatile. We are not a family of wealthy means, and my state-funded medical insurance barely covers the medications I require to survive.
My sister, Medina, created the GoFundMe knowing the hardships we have been facing with my diagnosis. My father, before I had the strength to crawl, was having to piggyback me up and down the stairs when I needed to visit the doctor. He will be 65 this year. I have been breaking their backs financially, and don’t want to break their backs literally, as well.
If you would like to contribute to this campaign, please go to https://www.gofundme.com/aliswheelchairramp?ssid=1015185590&pos=1.
This interview was edited for length and clarity.
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