I wanted to post this message because of something that came to mind as I was reading one of the boards about how we found out about neurofibromatosis. It was 42 years ago. Not as much was known about nf as we know now. We where told about the shorter life expectancy of people with nf and that they do not live beyond a certain age; we know now that is not the case. That was how little was know about nf at the time. This is one of the reasons we must get as much information out about nf as we can. I would like to hear from you. How old where you, and what where you told, when you or a family member was diagnosed with neurofibromatosis?
I made a special category called a message from Reggie. In this section I like to write daily experiences.
Believe me, when I say this. I wasn’t hurt by it, and I will still to go to the gas station where this happened. I went to get gas, and I saw a lady that saw me on the news. She spoke to me very nice. She told me she was proud of me. She also told me she remembered me as a young child. She said keep up the good work.
When I went to pay for my gas, the attendant asked me, My god! did someone fight with you? I told him no, I was born with neurofibromatosis. He then said God bless you. I ‘m so sorry. He seemed very apologetic. He just seemed sorry. After I finished at the pump. I went back in and gave him my card and told him to go to my site. He thanked me and said he will visit. This is not an attack on the guy, or the station. I will go back. He was nice. It’s up to us to make sure nf is better known.
Now the point I’m making is that we must get more exposure via NET, TV News segments, and PSA’S. When people get a chance to see and hear about nf, it will not be something new to them. This is why I’am happy to let people know what my problem is. I can still say it was a Tremendous day.
My message this morning includes all my friends, that have a concern with both types of nf. We can support one another. I received a very nice message that prompt me to post this note. this person, has nf2. I was so happy to read the email. The concern was that he has nf2 He may have felt left out. I hope not. Please know, I would like to hear from anyone who has both types of nf, concerned family members, and friends. Lets start posting. I would like to know you are there. Your post may very well help some one. All of you are teling me what a help I have been. Well all of your emails and comments have really made me want to do more. Thank you for supporting me.
Make it a tremendous day
This post is some what different from all of my earlier posts. I am asking all that have posted on my blog to share in this one. When things are going really well, do we believe it should be this way? Or do we expect it’s too good to be true.
You may have read in one of my previous posts, where I said I have never felt as happy as I do now, now that the Reggie Bibbs web-site has begun. So many of you have written and made a lot of kind comments. The plan is to help make NF more known and talked about like so many other disorders. It seems as though lots of my friends, and I call them my friends because I have heard their story and I have learned they too have NF. They write and support me. Not thinking of themselves and their family members who have NF. I get so much joy out of this and I hope to reach a lot more. I hope we can reach others who do not have NF but would like to know more about it. We will, and we will make a difference. Let me know your thoughts.