frequently asked questions


Here are a few answers to the most often asked questions we receive....


Q: Do you have a sense of touch?

A: Yes. Our sense of touch is in no way affected by our inability to feel pain. For example, if we are cut by a knife we will feel the blade slicing through our skin but we will not feel the pain that is associated with the injury.

Q: Do you have a sense of “hot” and “cold” temperatures?

A: Yes. We have a sense of hot and cold temperatures. A major problem growing up was not “understanding” the damaging effects of extreme temperatures. For we would feel something that is either extremely hot or extremely cold and identify it for what it was. But, it took many years to understand what damage could be done by interacting with those elements in an unsafe manner.

Q: Do you experience emotional pain?

A: Yes, we most certainly do.

Q: What measures were taken by your parents to, at least, try to prevent injuries as a child?

A: Mainly due to the correspondence between both families (Waters and Pete) the same measures were taken in preventing injuries. Adult-sized socks were placed over our hands to prevent us from chewing on our fingers and scratching our eyes (in some cases goggles were also used to protect eyes). Helmets were used to protect ourselves from concussive damage and swelling of facial tissue. During summer months our exposure to heat was monitored because of our lack of ability to expel heat efficiently (we do not suffer from anhidrosis).

Q: What are the most frequent types of injuries you had as a child?

A: (Paul) Jumping down the stairs was the most common injury I had. I would also injure myself by pushing a swingset away from me and having it slam into my face. At the time I enjoyed the reaction I received from others and the time I would spend in the hospital. Touching hot objects was another one of the most frequent injuries I had. I loved to hear the sizzling of my skin. Broken legs were a very common injury for me.

A: (Steve) I would have to say jumping from extreme heights was the most frequent means of my injuries. Whether it be from the roof of a house or a tree. As a toddler banging my head against the wall to the point where my forehead would swell up led to many hospital visits.

**Head injuries were the most worrisome and frequent between the both of us.

Q: How did your parents keep an eye on things like infections if you did not exhibit any or few outward symptoms?

A: Our parents would constantly check us for heat and swelling on various areas of our body and also take our temperatures, if we did have a temperature it would normally signify some sort of infection. Once an infection became too bad then we would normally suffer from nausea hence the need to try to detect an infection before it reaches that point.