13-year-old Kaydence Bryant has always had a big personality. This easygoing teen is an honor roll student, loves playing Pokemon and Skyrim, and plays trumpet in the school band. Unfortunately, Kaydence has had to put her interests on hold after being diagnosed with an extremely rare condition called Degos disease, which affects an estimated 1 in every 39 million people.

According to WZZM TV, Kaydence first noticed white-colored lesions emerging across her skin. The lesions didn’t hurt or itch, so her family felt like there was nothing much to worry about. Then, in May 2023, Kaydence suddenly began experiencing debilitating stomach pain. The pain made it hard to eat, sleep, even move. While her parents initially believed that she might have a stomach virus, her continued complaints were concerning.

When Kaydence was finally moved to the hospital, doctors realized that she had an intestinal perforation. As they worked diligently to address this, they also discovered intestinal necrosis (two areas of the intestine where the tissue died) and small lesions similar to those on her skin. The doctors weren’t sure what was happening. It wasn’t until doctors throughout the hospital, and from different fields, put their head together that they made the diagnosis.

As of today, Kaydence has undergone numerous surgeries, requires frequent intravenous fluids, and must take a blood thinner twice a day. Her family is raising funds to assist with medical care and support, transportation, and other needs. If you would like to donate, you may do so via their GoFundMe.

What is Degos Disease?

Also known as: Degos syndrome; Degos-Kohlmeier disease; malignant atrophic papulosis; Kohlmeier-Degos disease; papulosis atrophicans maligna

Degos disease is an ultra-rare disorder in which small and medium-sized arteries become blocked. As a result, blood flow is restricted in certain areas of the body. The exact cause is unknown. Some research suggests that there could be a genetic predisposition triggered by viral infections, an underlying autoimmune cause, or coagulation disorders. Cases of familial Degos disease tend to have solely cutaneous (skin) manifestations whereas others have systemic impacts. The systemic form is often more severe, more aggressive, and more life-threatening. When limited only to skin, it is often benign.

Symptoms related to Degos disease may include:

• Skin lesions (small papules on the trunk and upper arms) lasting for weeks to years
  • These lesions may or may not itch. They typically begin as reddish or pink bumps but later atrophy, causing white centers with a red border.
• Lesions in the large intestine
• Abdominal pain
• Drooping eyelids
• Nausea and vomiting
• Optic nerve swelling and/or atrophy
• Cataracts
• Double vision
• Fatigue
• Shortness of breath
• Cranial nerve paralysis
• Vomiting blood or passing blood in stool
• Diarrhea or constipation
• Unintentional weight loss
• Partial loss of vision
• Perforated bowels (complication)
• Seizures

This is not an exhaustive list of symptoms. Unfortunately, systemic Degos disease comes with a poor prognosis rate, often because perforations lead to life-threatening infections. Anti-platelet drugs may stop lesions from forming. Experimental treatments are also being explored. Learn more about Degos disease here.