The town of Little Elm recently presented a proclamation to a local resident to help raise awareness about a rare disease.
Angellisa Cooks, 26, was born with a bone condition called Rare Blount’s disease, which is a developmental disorder characterized by an abnormal growth plate in the upper part of the tibia. It causes pain and can lead to deformity and arthritis. Cooks said approximately 200,000 children and adults have the disease.
“Children from the ages of 2 years old to 18 have anywhere from two to 30 surgeries just to correct it,” Cooks said. “Sometimes it’s not corrected, sometimes it is and it’s still not curable. It brings on other skeletal and bone diseases. I have three other conditions due to my Rare Blount’s.”
She said certain areas of her leg get inflamed and causes pain, and she’s endured nerve damage. In 2018 Cooks was diagnosed with severe rheumatoid arthritis in her left knee, which turned into Rare Blount’s disease in that knee as well. She has an uneven hip growth bone in her left hip, which has turned into hip dysplasia, causing her hip to push into her pelvic bone creating a lot of pain. She also has nerve damage to her lower back, knee pain and lymphedema in her thighs.
Cooks said her condition prevents her from walking or standing for a long period of time, bending over and lifting things. Depending on the day she will get around by using a cane or a walker. She said it’s difficult for her to get to certain places without a mobility chair, which she doesn’t have right now.
“No sports, exercise or working out,” Cooks said. “A lot of things that a normal 26-year-old can do.”
Then there’s the emotional toll Rare Blount’s Disease has taken on Cooks.
“I have always been on the heavy side since I was a child,” Cooks said. “So my weight plays a part in my disease as well. Growing up, learning how to deal with my pain but not only that doctors were very unaware of what my disease was. I dealt with how people looked and treated me because of how I walk. You definitely go through a lot being 4-feet, 11 inches, plus size and disabled and having a part of your body being deformed.”
Rare Blount’s disease also keeps Cooks from working. Instead she spends her time as an advocate for raising awareness about the disease, which she began doing in 2018.
“I go to public speaking events, and if I can I put on events,” Cooks said. “I’ll talk to researchers and colleges to let them know about this disease. They try to help me get answers, and I help them, too.”
Cooks said she raises awareness on social media and creates posters and brochures on the disease.
Rare Blount’s disease affects less than 1 percent of the population, according to the National Institute of Health. There is no cure.
Because of the disease’s rarity, patients can have trouble finding a medical expert who is familiar with Rare Blount’s disease, as well as research and treatment.
Mayor Curtis Cornelious presented her with the proclamation, which recognizes June 15, 2021 as Rare Blount's Disease Day – the proclamation was originally scheduled to be presented last month. He said the Cooks family moved to Little Elm about a year and a half ago and began asking around on social media how to get a proclamation to raise awareness.
“When this was placed on the agenda I did some research myself,” Cornelious said after the meeting. “I had never heard of this.”
Cornelious said Cooks and her family have asked about having an awareness day in the town for Rare Blount’s disease.
“We’ll do what we can to help spread the word,” Cornelious said.