Last year at this time I plunked a trivia game into this column space in honor of a person with whom I became very friendly through YouTube. This would have been a fellow with the user name “Peter Pot NL 4:20.” We had celebrated his birthday in the lounge the week before and carried out a fundraiser as well. I'm sure your memories won't take you back that far so I will fill in the blanks. (Hey, I can't even remember what I just typed so I'm with you!)
The reason why I was carrying out a fundraiser was so that Peter could perhaps raise a few dollars in order to attend a conference in Nashville pertaining to his skin disease, Ichthyosis. He was born with said condition and at the time of last year's column, he was the oldest person in Canada to be stricken with it.
A few days ago I got some terrible news that Peter had passed away. He had just turned 33 on March 4 and then died the next week. The last couple of months were very rough on him as he developed a lot of problems with his other organs.
Keep in mind that the skin is the largest organ in/on the human body. If skin is diseased in a major way, it can wreak havoc on the rest of the it. This is basically what happened to this fine example of a human being. He began to have fluid build-up around the heart and his other organs were failing as well. He was in tremendous pain for really most all of his life but the use of cannabis helped him a great deal. (This is why the word “pot” as well as the reference to “4:20” were in his user name. I have no real clue why this is called 4:20 but it has been for years, just in case you didn't know. Oh, the NL stands for Newfoundland-Labrador as this was where he lived.)
It was Peter's wish to spread awareness about this condition in order to help other people. He was especially close with a young boy who was also born with Ichthyosis and Peter took him under his wing, for lack of a better description, to protect him from ridicule. Peter had been teased throughout his life because of his physical appearance and he wanted to do everything he could to educate people. I think we can all agree that when people are educated about things like this, they are less likely to carry out bullying.
I am trying to keep Peter's wish alive by giving out information through this space and via my YouTube channel. The best source for gathering information about Ichthyosis is by way of a website called “FIRST,” which stands for: “Foundation for Ichthyosis & Related Skin Types.” If you just type “first skin” into a search engine on the internet, it should be at the top of the list. Actually, the entire website is: firstskinfoundation.org. For people who are not into computers, I'm going to place some information at the end of this column space for you.
Peter enjoyed life to the fullest even though he was in tremendous pain for most of it. In addition to having a difficult time eating and sleeping, he also suffered from depression, which is pretty common in people who have any sort of disease.
When he had good days he would go out cruising in his Mustang and film some of the beautiful region in which he lived. He would share those videos on YouTube and that made us feel like we were closer to him physically. He enjoyed singing and music in general and dreamed of making a CD one day. He had also been a DJ on numerous occasions.
As far as his Mustang was concerned, I don't think I've ever seen a more spotless vehicle. The man would carry along cloths to take care of any blemish that would appear on the car during the course of his excursions. Peter was a big fan of auto racing as well and would attend races as much as possible, usually with his best friend Megan.
I don't know about you but I oft' feel helpless when something like this happens and especially if I'm separated by many miles, as was the case with Peter. He was ADAMANT about raising awareness of Ichthyosis so that is what I shall attempt to do. The rest of this piece will contain information from the above-mentioned website.
Even though his life was tragically short, Peter left his impact on the world. By way of YouTube and other social media outlets, he was able to plant the seed of knowledge as it relates to Ichthyosis. Peter will be missed for those of us who loved him will keep his memory alive. Thank you for reading this as I know most of you clearly have never even heard of this man or the condition. Speaking of which, here is that information from the “FIRST” website.
Ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. The prefix "ichthy" is taken from the Greek root for the word fish. Each year, more than 16,000 babies are born with some form of Ichthyosis. A study has determined that approximately 300 babies are born each year with a moderate to severe form of ichthyosis. Ichthyosis affects people of all ages, races and gender. The disease usually presents at birth, or within the first year, and continues to affect the patient throughout their lifetime.
At present time there is no cure for Ichthyosis, however dedicated researchers and physicians have and continue to develop effective ways to help manage the disorder. Parents are also playing an important role in sharing different treatments they are receiving with fellow parents of affected children and affected adults.
Besides the common scaling condition of the skin and depending on the severity, there may be associated psychological symptoms due to the abnormal appearance of the skin. Ichthyosis is disfiguring for most affected individuals. In addition to the numerous medical complications like dehydration, infections, chronic blistering, overheating, and rapid-calorie loss, patients with Ichthyosis are subjected to psychological issues. Patients are often ostracized and concerns of isolation, low self-esteem, and depression are common due to the appearance of their visible, chronically shedding skin.
The reason why the skin is so important to us is because it's the primary deflector for the human body. It encases and protects our body from the external environment. The barrier that makes up the skin has many components, which include a barrier to excessive loss of body fluids or uptake of noxious chemicals in the skin. The skin is made up of many layers, but it is the outermost layer that provides the most protection and it is this layer where most Ichthyosis patients have a defect.
Please visit: firstskinfoundation.org for more information or to make a donation.THE END (Interstate Crosscheck, “War is a Racket,” by General Smedley Butler, AIPAC Lobby and its influence)