The medical profession needs to update the way they think about and treat Down syndrome patience. Thanks to advances in many treatments, those born with Down syndrome on now living much longer lives. However, the provision does not seem to have kept up with these advances. In the United States, looking at a nationwide level, only 15 medical programs designed for the treatment of people with Down syndrome are not located in children’s hospitals. Many also do not accept patients who are over 30 years. Clearly, as an NDIA provider on the Gold Coast, this is disappointing news as many adults with Down syndrome live so much longer and need medical care just like the rest of the population.
Patients Need a Voice
Sadly, all too often, patients with Down syndrome are side-lined and not taken seriously when they complain about aches and pains. In one such case, the parents of a young lady with Down syndrome knew there was something wrong after she fell in the shower, and her personality changed. She stopped speaking, no longer wanted to go outside and stopped laughing. Initially, the doctors that her parents took her to simply generalised the fact that because she was Down syndrome, they should not expect anything different, and this was totally normal, but they were not going to give up.
When her parents finally hunted down a specialist nurse practitioner, Moya Peterson, who is part of the University of Kansas Health System which offers a specialist clinic for anyone, regardless of age, who has Down syndrome. Peterson ran extensive tests and examined the young lady and was able to determine that when she fell in the shower, she did actually obtain a traumatic brain injury. Treatment was needed, and now the few words that she does speak have come back, and she is once more the laughing, smiling person her family know and loves. She now goes out with the family to meals in restaurants, helps at a nursing home, folding linen, and has returned to her beloved horse-riding sessions. Without this program, her mother says that it was unlikely she would have recovered and would have become a recluse.
More Prevalent
Since 1970, the number of babies who were born with Down syndrome surviving to adulthood has tripled. This is thanks to early intervention to correct birth defects, but ongoing care cannot be ignored. A Down syndrome patient may not be able to articulate well and explain what is hurting, but that does not mean they should be dismissed. Peterson has spoken extensively about the need to improve the care given to Down syndrome adults. She has said that it’s imperative that doctors listen when a patient says they are in pain. In another case, she explains how a 44-year-old male with Down syndrome complained of tickling in his chest. As a baby, he had open heart surgery to repair a defect, and therefore everyone assumed that it was something to do with this causing the problem. However, after extensive research to help him articulate what he is feeling, she finally diagnosed Crohn’s disease.