Back in May, I received a phone call from a parent in Georgetown. His 15-year-old daughter had attempted suicide for the second time because of the pain from Juvenile Arthritis, the medications and not being able to sleep. He told me his daughter was on sleeping pills, anti-depressants, methotrexate and Humira. I talked to him about who was treating his daughter and it turns out it was a rheumatologist, but not a pediatric rheumatologist.
I talked with him about some options to help his daughter and I asked if I could help them get an appointment with a pediatric rheumatologist in Austin. He agreed and they were seen within 2 days. Gloria also helped me with some names of doctors (psychotherapists) who treat children with chronic diseases. I also wanted to give his daughter something to look forward to and invited them to the JA Family Weekend and they were excited.
Today, I decided to call and check on her. Her dad said "I have been meaning to call you and let you know what's going on. Thank you for saving my daughter's life."
It turns out that once she was seen by the pediatric rheumatologist, her diagnosis changed. As it happens, she doesn't have JA and she did not need those medications. Once they properly diagnosed her and took her off the medications she didn't need, she has improved a great deal--especially her state of mind She still has pain, but has now begun physical therapy. She does have an arthritis-related condition -- fibromyalgia -- but that requires an entirely different treatment protocol.
Thank goodness it is not often that we can say we actually helped to save a life, but this is one instance where it is true. We never know who's on the other end of the phone and what they need, but this does bring home the fact that it is important that we are here to answer the phone and provide those resources.
It could have been my son.
On behalf of the approximately 300,000 children in this country who are affected by an arthritis-related disease (more than juvenile diabetes, cystic fibrosis and muscular dystrophy COMBINED, THANK YOU for being there.
Great post Voice, thank you. My own daughter, who has always been in perfect health, eats very nutritionally, is a personal trainer and still in her thirties, was diagnosed with Rheumatoid Arthritis (RA) this past year. The pain is a very difficult part of the disease. It is heartening to read about a young person getting the help they needed. The best part for me though, is someone questioning -- whether or not she was getting enough support, whether or not she was seeing the best doctor for her, whether or not she had the proper diagnosis, whether or not there were additional support actions that could be utilized --- these are the parts that warm my heart. People going back and questioning themselves, the diagnosis, the medicines, the treatments, everything - to make sure that the best was being done for her. Rational, logical, problem solving, scientific methods and not - God's will, sinful lives, poor decision making, learn to deal with it, life's not fair, blame the victim rationalizations.... How fantastic and affirming that real live caring Americans still exist!
Thank you Voice, that is a terrific and uplifting story. The power for positive good that exists in each and every one of us. Let's hope it's contagious!
The world is a better place for your efforts. Be it in heaven or the akashic record, you must be blessed.
Thank you for sharing this with us. In a world where we focus so much on the negative it is nice to hear about people doing everything they can to help others.
I have chills reading this.
Bless you!