According to a recent article featured in News5Cleveland.com, there are over seven thousand rare diseases worldwide that affect over thirty million people in the United States.
Several days ago, patients and their families observed Rare Disease Day. It is usually observed on the last Sunday in February and is an opportunity for people with rare diseases to involve their communities in fundraising and awareness.
One family in Lake County is well aware of the impact rare diseases can have on a family. Two daughters, Jess and Alyssa Phillips, each have rare diseases.
Alyssa began having pain when she was seventeen years old. She believes the pain was the result of years of roller skating, causing the ligaments in her ankles to be stretched. Alyssa had surgery on her left ankle in 2012. Although the surgery was successful she developed pain which became worse over time.
In a very short time, Alyssa was diagnosed as having complex regional pain syndrome (CRPS). It is a very rare disease, as NORD statistics show that five out of 100,000 people are diagnosed with CRPS each year. Usually, the pain is a result of an injury or surgery. There is no cure. The pain is managed with therapy and various treatments.
Alyssa is working with Amy Dubois, a physical therapist at the Richmond Medical Center. Amy reported that the traditional physical therapy did not help Alyssa, but she now uses another approach that seems to be working for her.
Yet eight years after her CRPS diagnosis Alyssa still cannot completely accept her illness. Alyssa feels that this helps in a way as she can live with it and consider it a learning process. Her philosophy is that the patient has a choice of accepting the disease or being sad. Alyssa said she does not want to be sad all the time.
The outpatient liaison at University Hospital said that Alyssa’s outlook is very important because pain is not an emotion. It is fear, anger, sadness, resentment, and loss. That is something that CRPS patients must work through.
The Second Rare Disease Family Member
Jess, Alyssa’s older sister, was diagnosed in January with primary mediastinal B-Cell lymphoma. Jess started chemotherapy on February 8 of this year.
Jess describes how she cried when she was first diagnosed. Things changed a bit when she started her chemo treatment. She decided “no crying” as it does not help. She decided that she will take the attitude that she is not fighting the cancer but just letting the chemo do its job and kill the cancer. So far, her new approach is working.
The Third Member of the Phillips Family
Their mother, Debbie Phillips, is their health advocate. She spends hours online and admits that she finds a lot of CRPS information frightening. However, Debbie works through it as it is a necessary part of her research.
Debbie connects with CRPS patients throughout the country. She has also set up 1k and 5k fundraisers which she calls Fight the Flame.
Debbie explains that one of the many frustrating aspects of the disease is that a treatment that works one day does not always work the next time.
But one thing is certain, that the Phillips family will continue to work as a unit and will continue to support each other.