Someone asked me recently how to explain Neuromyletis Optica (NMO) to a child. Not an easy task, I can tell you from experience!
When my daughter was diagnosed, she was 11 and her sister was 8. We explained that everyone has an immune system. Our immune systems are like the superheroes of our bodies. They fight off germs to help keep us from getting sick. For some reason, big sister's superheroes were confused. They were fighting too hard. They were attacking the germs, but they were also attacking her body too. Those crazy, confused superheroes!
We talked about how our brains have these things like wires going through them. The wires have a special covering to protect them called myelin. The myelin is kind of like the protective covering we see on cords for things like our vacuum or lamps. For some reason, her superheroes were attacking the myelin covering on her wires. That meant that sometimes the message traveling through the wire get messed up. That's why she was having trouble with her vision and why she would get headaches.
Her medications, a combination of steroids and immune suppression medicine, would tell her superheroes to chill out. As a result though, we also explained that we would now have to be extra careful about staying away from germs. Now that the medicine was making her superheroes chill out, that means they aren't fighting off germs either.
We didn't go into the heavy duty stuff. We didn't talk about the blindness or paralysis that some patients with NMO face. I didn't feel like my girls were ready for that. When we participated in our first fundraising event for the Transverse Myelitis Association, we did see families dealing with those tougher issues, so at that point we had the conversation about how the disease can effect people differently. We discussed how thankful we are for great doctors and how important it is to participate in activities to help find a cure for rare auto-immune diseases like NMO, TM and ADEM. There currently is no cure.
I still don't know if we handled things the right way, but thankfully both my girls seem to understand that NMO is a serious disease, but they aren't bogged down by the weight of it. It is tricky to educate them without frightening them, but I think somehow we have done it.
If you are interested in learning more about NMO, the Guthy-Jackson Charitable Foundation and the Transverse Myelitis Association are great resources.
When my daughter was diagnosed, she was 11 and her sister was 8. We explained that everyone has an immune system. Our immune systems are like the superheroes of our bodies. They fight off germs to help keep us from getting sick. For some reason, big sister's superheroes were confused. They were fighting too hard. They were attacking the germs, but they were also attacking her body too. Those crazy, confused superheroes!
We talked about how our brains have these things like wires going through them. The wires have a special covering to protect them called myelin. The myelin is kind of like the protective covering we see on cords for things like our vacuum or lamps. For some reason, her superheroes were attacking the myelin covering on her wires. That meant that sometimes the message traveling through the wire get messed up. That's why she was having trouble with her vision and why she would get headaches.
Her medications, a combination of steroids and immune suppression medicine, would tell her superheroes to chill out. As a result though, we also explained that we would now have to be extra careful about staying away from germs. Now that the medicine was making her superheroes chill out, that means they aren't fighting off germs either.
We didn't go into the heavy duty stuff. We didn't talk about the blindness or paralysis that some patients with NMO face. I didn't feel like my girls were ready for that. When we participated in our first fundraising event for the Transverse Myelitis Association, we did see families dealing with those tougher issues, so at that point we had the conversation about how the disease can effect people differently. We discussed how thankful we are for great doctors and how important it is to participate in activities to help find a cure for rare auto-immune diseases like NMO, TM and ADEM. There currently is no cure.
I still don't know if we handled things the right way, but thankfully both my girls seem to understand that NMO is a serious disease, but they aren't bogged down by the weight of it. It is tricky to educate them without frightening them, but I think somehow we have done it.
If you are interested in learning more about NMO, the Guthy-Jackson Charitable Foundation and the Transverse Myelitis Association are great resources.
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