About two weeks ago, I received a Facebook message regarding our family’s psoriatic arthritis diagnoses. When I started reading, I thought it was going to be spam about the newest, greatest “cure” for psoriasis and psoriatic arthritis. Instead, it was message aimed at undermining our doctors and how science and medicine are false. I’ll admit that there was definitely a language barrier, but the underlying main message was still the same: Kids do not get arthritis.
The note contained many wild assumptions about what is actually wrong with the two of us and how our symptoms manifested. I could have just ignored the message – and that thought did cross my mind. But I believe it is important to address this nonsense so that maybe – just maybe – this person will think twice about voicing opinions with no scientific facts to patients who may already be feeling overwhelmed, confused, and scared. It also infuriated me to see that his note was only based on 700 characters he read online in my WEGO Health profile. No person – doctor or otherwise – could possibly make an accurate diagnosis based solely on this.
With that, below is his actual original message and my reply to him.
Dear friend
Hello – you wrote (My story begins, not with me, but with my son, Andy. At age 4 he was diagnosed with psoriasis, and a year later with juvenile psoriatic arthritis. At age 28, three years after he was diagnosed, I broke out with spots on my arms, and six months later, I had pain in my back and knees. Between the two of us,) from this story I have understand your son (andy) is in 28 years old have diagnosed in psoriatic arthritis to here story is related to (andy) if you have married in 20 years old age so now you are 48 years old. in first I must write about (andy) his problem is not arthritis his pain is from playing in sport such as football or basketball in college because in young age psoriatic arthritis can not appears. but about for your problem, probably you have neck arthritis this pain is side effect from pregnancy it moving to back, hands, stomach, with so much pain that patient like to cry from hard pain from it. during the pregnant many essential materials for mother’s bone transferring to baby body. this pain after two years or more will appears that you need use some anti pain drugs. however would you like hear from me about psoriasis please add me as friend.
Dear friend,
Thank you for reaching out to me and expressing your concern for our family. I see you’ve read my WEGO Health profile. I find it odd that you can come to these conclusions with only 700 characters worth of personal information found in that profile.
First, I’d like to clear up some confusion about our current ages, when we were diagnosed, and how these diagnoses were made.
My son, Andy, was 4 when he was diagnosed with psoriasis and age 5 with juvenile psoriatic arthritis. He is now 18, and has just started his freshman year of college. Andy does not play sports, and his pain is not from any injuries. In fact, he most likely had juvenile arthritis at age 2. I encourage you to read more about his early story.
But Andy is not alone. In the United States alone, approximately 300,000 children under the age of 16 have a form of arthritis. This is an autoimmune disease that is not from injuries or playing sports. Doctors alone make the diagnosis. With input from the parents, doctors will determine the best treatment for the child. There is no simple treatment, and there is no cure.
For me, I am only 39 – soon to turn 40. I will admit that my body often feels like it is 48 or even older, but that is because of my arthritis symptoms. I was married at age 21, and I was not diagnosed with psoriatic disease until I was 28. This was seven years after giving birth to Andy, and it was not a result of pregnancy and passing “materials” from baby to mom. My first symptom was not neck pain; it was pain in my back and knees. As science and doctors have concluded, genes were most likely passed from my biological father’s side of the family where psoriatic disease is prevalent.
I do agree that the pain patients feel can often make them want to cry, and that for some, pain medication is necessary in order to function. I wish pain medication would simply clear arthritis, but it will not. Pain medication only helps one of the symptoms; it does not fix the disease itself. There are many symptoms of autoimmune arthritis, and what is a correct treatment for one patient may not be for another. Again, there is no cure for arthritis.
While I believe your note was sent with the utmost concern for our family’s health, I urge you to find out more information about a patient before jumping to any health conclusion. Diagnoses should be left to doctors. Treatments should be prescribed by health officials with input from patients. Many patients – especially if recently diagnosed - feel overwhelmed, confused, and scared about their futures. Patients need information based on science and research, not conclusions based off of a 700-character profile read online by a person without a medical degree. Patients need understanding and hope, of which you supply none. Advice should be given when asked and only after extensive information is known about the patient. Please remember this for the future when you feel the need to give your unsolicited opinion to a patient you have never met.
Respectfully,
Jaime Moy
