World Rare Disease Day

Feb28

Today is World Rare Disease Day. One of the first things I thought when I heard this was, “Do I fall in this category?” Yes I have a disease but is it considered a rare disease? Just because so many people have no idea what IBD is doesn’t necessarily make it rare.

According to the National Institute of Allergy and Infectious Diseases (NIAID), a division of the US Department of Health and Human Services that accumulates and publishes the statistics for Crohns disease and other health problems, one in 500 people suffer from Inflammatory Bowel Disease (IBD), the group of diseases that includes Crohns syndrome and ulcerative colitis. The National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK) reports similar numbers. Approximately 544,000 people suffer from IBD in the United States. There are typically three or four new cases per 100,000 people reported annually. – Article Source: http://EzineArticles.com/289309

Looking at those numbers, 1 in 500 people suffer from IBD, I would say no. But go online to a social media site like Twitter and anyone with IBD is proudly letting everyone know they are celebrating the day. As much as I love advocating for my disease and help bring awareness to it, is it right to drown out others trying to raise awareness for really rare diseases?

As I was pondering this at 8:00 in the morning, I was forwarded an article found here http://bites.today.com/_news/2013/02/27/17121375-restaurant-to-non-patron-you-must-pay-to-pee?lite This isn’t necessarily about any illness but anyone with IBD understands the problems with this kind of thinking. And that leads into how so many people don’t know about IBD.

So is it a rare disease because people don’t know about it? About 10 years ago most people probably didn’t know what HPV was. Now it is known that it is the main cause of cervical cancer. It wasn’t a known disease yet it was far from rare as it was determined that almost everyone that has had sex has at one point in their life had the disease.

I talk to a woman online who is pretty big in the IBD community. She suffers from a condition that causes inflammation all over her body. Everyday is a challenge for her. No one even knows how to treat it at this point because not that many people suffer from it. To me, this is a rare disease. This is something we should spend the day talking about and educating people on.

I love advocating. I love everyone I have met doing it. I talk to so many great people who have decided to speak up for IBD. We have a big community and we are becoming very vocal. But are we rare? I wish I could say yes, but we aren’t. I think we need to put our needs aside for one day and focus on those that really need help, because with rare diseases, there is little help out there. There are almost little amounts of treatments available and even less cures. For us with IBD we have a lot of options, even if they aren’t helpful. There are many that suffer with no treatments available. Today I will think of them and hope for some help. It is the least I can do.

Wego Health HAAWards Finalists

Feb23

I know I haven’t written much in the past month. I have been really busy with so many things that I haven’t had the time to come on here. But, I do now and I have great news (well, great for me) 🙂

Last year Wego Health opened up nominations for their Health Activist Awards and I was nominated for the Ms?Mr Congeniality award. This past week they announced all the finalist and I made the cut. So I am now one of 5 finalists. Sadly I am not up for any of the other awards I was nominated for but that is ok. Just being nominated is an honor.

So, I was sitting here thinking about this award and just what the category is all about. Mr. Congeniality. Anyone that knows me might say I am far from this in real life. I can be very loud at times and even rude. I would have to agree with those people because, yes, I am. I know I am and I am ok with it. But online, I am another person. When it comes to an illness, you have to be different. I don’t mean in a talk in hush tones and walk on eggshells different. It is just that I know what it is like to be sick with a disease no one really understands except for the people with it.

Part of going through life with IBD is that no one can see it and most definitely most people don’t understand it. Heck, CCFA wants to show everyone it is a pooping disease. Because of this many of us are depressed, angry and just can’t cope. It isn’t easy to deal with a disease when no one around you can help you out. I understand all of this and I know if I spoke to anyone with IBD in a nasty tone, it would not go well. So I have to alter who I am. When it comes to people with any illness, I turn into a caring person. I used to not want to deal with illness but now, I have made it a part of my life. And I am using it to grow. Because I change who I am to people online, I am trying to be a better person in my real life also. I am trying to be more caring, more understanding and less abrasive.

People online see me as a congenial person and when my wife saw I was nominated for this award she laughed. This really hit me as it was really then that I noticed I was two different people (that’s the Gemini in me). So just being nominated for this award has already helped in changing me. I am now trying to be a better person. Not just to sick people, but to everyone.

As for the award, I share the honor the honor with some other people who have now opened my eyes to some other illnesses that I didn’t even know existed. I hold nothing against these people even though I am battling with them for the award so I want to share who they are and their site. They are:

Barby Ingle – www.barbyingle.com

Pamela Sloate – http://dystoniamuse.com/

Peachy Pains – www.peachypains.com

Tosha Sisler – www.bottledtime.wordpress.com

Good luck to everyone for the final spot and no matter who is given the award, we are all winners.

Gluten Free Rant

Feb6

I went out to eat this weekend and something jumped into my head that really got me thinking. Many restaurants are now serving gluten-free meals. They recognize there is a big issue out there and they are now catering to the many people out there that can’t or won’t eat gluten. I like that. I am happy for that.

I work in the hospitality industry. Maybe one day I will own my own restaurant. What I know is that when you open a restaurant and create a menu, you can’t keep that same menu forever. You have to change it over time to keep up with trends and what the customers want. Many restaurants do this and are now moving to keep up with the gluten-free movement. This is a good move on their part. There are even gluten-free restaurants which I think is great.

Now, here is my rant. I went into a big national chain restaurant (who will remain nameless) and they had a gluten free menu. I loved it because items I thought had gluten in them on the regular menu turned out to be gluten-free. I placed my order (my wife ordered from the regular menu) and then they brought out the bread. Before I went GF I loved their bread. Now, I looked at it and drooled knowing I can’t touch it. On another day I was in a diner and again, the bread basket comes out with delicious looking items.

With this big push to be Gluten Free sensitive the one thing that hasn’t really changed is the bread basket. As anyone on a GF diet knows, this item is a major no-no. Bread is a big component of gluten. So why isn’t anyone focusing on this item. This is one item to change very easily. There are tons of GF breads and rolls out there. There are GF bread sticks and crackers. Why can’t restaurants include these items for us GF customers. Why are we forced to either drool over the regular bread baskets or sit there alone. Now, I am not asking these restaurants to make their own. I know there are many places that are real small and don’t have the kitchen space. I am fine with that. But you can buy them and put them in their own basket for us GF dieters.

What also gets me is in the chain restaurant they at least asked if we wanted the bread. In many places they don’t ask. I know first hand bread costs have gone up. If they would stop bringing out the bread automatically they would probably save money which they can spend on the GF bread.

Eating out in a restaurant should be an enjoyable experience. I used to love going out to different places. Since going GF I enjoy it less and my selection of restaurants have decreased. Being teased at a restaurant makes the experience even worse.

Ok, rant over. And now I want a slice of bread.