Dafne Wiswell's Story of Raising Children With Type 1 Diabetes and Ankylosing Spondylitis

The Spoonie Struggle

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Episode 31: Dafne Wiswell's Story of Raising Children With Type 1 Diabetes and Ankylosing Spondylitis

In this episode, Dafne Wiswell discusses her son’s experience with Diabetes Type 1 and her daughter’s experience with juvenile arthritis and Ankylosing Spondylitis. Her son was diagnosed with Diabetes when he was 2. He started having accidents, drinking a lot of water, had reduced appetite, and experienced intermittent vomiting. Once a friend wasn’t able to recognize her child, she called the pediatrician ASAP. The pediatrician ran a bunch of tests and sent them immediately to the hospital where he was found to be in diabetic ketoacidosis. Treatment has included insulin, initially being injections and later using the pump. He also has a service dog that will sense when his blood sugar is low.

Her daughter started to experience pain starting at age 6. She took her daughter to a pediatric rheumatologist, where she was diagnosed with psoriatic juvenile rheumatoid arthritis. She was later diagnosed with Ankylosing Spondylitis. She has tried numerous medications for her conditions, but thus far, nothing has really worked. She is currently doing infusions once a month.

Challenges have included learning how to help a child who has a potentially life-threatening condition, learning to recognize and treat patterns, helping her child have a normal childhood and learn to manage his diabetes, finding ways to make it safe for her son to go out with friends, maintaining a romantic relationship, and having limitations on travel. She has advocated for her children by teaching them their rights, helping him learn how to advocate for himself at school, and finding less expensive ways to get medications for her children. She copes by prayer, allows herself to feel her emotions, knowing that her children can still live a good life, using social support, and removing toxic people from her life.

She recommends starting earlier with helping your children learn to advocate for themselves, helping them be informed about their healthcare, telling them to shop around for prices for supplies and insurance, and knowing your child’s rights.

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Hosted by: Jessica Temple

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