Earlier this month I wrote a post called 12 Things To Know About Rare Diseases. Since then I have received a lot of messages including other things people should know. So here are five more things you should know:
1. Chemo Stereotypes – “There is a stereotype of all children on chemo being frail, thin and balding,” a mom in my online Histio support group says. “I got grief from a customer in line at the grocery store the other day. Looking me up and down and prejudging myself and my son. She was making comments about my son being too big. I wanted to yell at her and tell her my son is on chemo and steroids try telling a toddler he isn’t really hungry.”
Although TV and movies show us that someone on chemotherapy is thin, frail and bald, that isn’t how it always is. There are several different types of chemo therapy and each has different side effects.
2. A Little Perspective – One mother of a child with Histiocytosis says explaining the rare disease to your child, that could statistically kill him, is heartbreaking. “They (doctors) don’t explain how to answer, ‘Mommy, I don’t want to die.'” She says its hard to hear other parents complain their kids are driving them nuts or they can’t for them to go to school when she’s just thankful her child is still alive.
3. Caregiver Taking Care of Themselves – I hear parents of children with rare diseases talk about how exhausted they are, that they aren’t eating right and that they miss having alone time with their significant other. Yet, they feel too guilty about having someone else care for the child so they can get a break, take a nap or have a date. I rarely ate after Joey’s bone graft. I would literally forget. And when I would eat, it wasn’t healthy and I rarely sat down to eat. I quickly learned that I had to take care of myself so that I was able to take care of Joey. That meant letting other people take care of him even if it was only so I could take an hour nap or run to the store.
4. Dr. Anxiety – People with rare diseases visit the doctor A LOT! They have a lot of scans and blood tests and many go through chemo or other treatments. Many children start fearing the doctor. They worry about needles, treatment and being hospitalized. As parents we have to find ways to calm these fears even though we know all of these things are a possibility.
5. Insurance Headaches – The insurance company often tries to dictate what types of tests, treatments and meds our children can have. They actually question the doctor. This often causes tests and treatments to be delayed or for parents to have the additional worry of how they will pay for it if the insurance doesn’t come through. They also have to spend time fighting with the insurance company, time that could be spent caring for their child.
Have you experienced any of these things? Anything else people should know about rare diseases? Anything that surprised you?
Knowing that it might be used in a future blog post, what are things you have done for a family going through something like this? If you are a family dealing with a rare disease, what could others do to help?
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Another big issue with rare diseases is that not very many doctors even understand what is going on. So, then the patient sees many doctors and some of them aren’t the most patient and understanding. But, then if they do find the right doctor, the idea of not having that doctor anymore is terrifying. I have various rare diseases, HLH being one of them, and it took me years to find a doctor that I trust. Unfortunately he’s a pediatric specialist, and I’m 19. I’ve been terrified about leaving him because of the terrible experiences I’ve had elsewhere.
Thanks for the note. I totally agree. We saw several doctors before my son was diagnosed. Cincinnati Children’s Hospital will treat adults with rare diseases that they specialize in. Will your current doctors and hospital do the same?
I just found your blog today and I would like to introduce myself as a survivor of Langerhans Cell Histopcytosis, previously known as Letter Siwee Syndrome. I was diagnosed when I was about 16 months old (1962) by a doctor in Indiana. I was adopted and my adoptive parents knew I was very sick but the many doctors that they took me to did not know what was wrong and so they didn’t know how to treat me. They continued to take me to other doctors until they found a doctor who had lost his son to the same rare disease. He vowed to my parents he would do everything possible to help me. And so I have been in remission since 1978.
I am writing to you for the sole purpose of giving you & your family hope. Up until very recent years there was not a society set up for this dease so I had no knowledge of another individual that is/has had the same rare disease as I.
If you would like to correspond with me in the future, you can email me: