Rare isnt always Rare....

Yes, I have a rare disease. Yes, having a rare disease stinks. Yes, rare diseases mean there is not much out there to do about them. And, Yes, rare diseases mean there is not many people out there with the disease. 

NMO in particular has statics of about 4,000 cases in the United states and half a million cases world wide. Women are more commonly affected than men, with a 6:1 ratio. Adults and children both can be affected by the disease. These statistics make NMO a rare or "orphan disease". 


As soon as I was diagnosed, I went to the internet. I researched everything you could think of, on every avenue available. It was on facebook though, that I was able to find my greatest help. There were a couple of support groups set up online for NMO (Devic's Disease). I was very surprised. I had been told that this was so incredibly rare, so I honestly was prepared to go this alone.

Finding these support groups, where I was able to freely ask any question my little heart desired was very therapeutic. It was also therapeutic to be able to read other peoples stories and questions and to know, that they were going through the same struggles as me. So, while yes, I may be the only person in my region with this disease, I did not have to feel like an orphan. 

Just because we are rare, does not mean people do not care. I can tell you that one of the biggest blessings of my life was going to my first NMO patient day. For those of you who don't know what that is, NMO patient day is something that the Guthy Jackson Charitable Foundation (GJCF) sets up for NMO patients to be able to get together and find out the most recent research. It is also there to just be able to be with other people who have struggled with the same things I have struggled with.

This patient day was a blessing to me. I was able to meet face to face with people who have been through or are going through the same things as me. They had suggestions on how to combat against the side effects of medications and just overall how to deal with this disease. During this patient day, I was able to meet a girl who was my age, who had just been diagnosed around about the same time as I had. It was so great to be able to meet her and spend some time getting to know her. To this day, we still stay in contact... whether it be to shoot the breeze, or to figure out what in the world this person or that person was doing. Either way, it was a huge blessing to be able to be at patient day. I have since been able to return to patient day for a second year, and was not disappointed in the least at year two. 

This brings me to talk about the GJCF.

Victoria Jackson has made it her life work to find a cure for NMO. She started the GJFC when her daughter was diagnosed with NMO, and there was no research out there to help. They went clear across the country to try to find help for Ali. If you haven't read their book, I would highly recommend it. Its called Saving Each Other (click the link to take you to a page to purchase or find more info on the book.)

The GJFC has supplied almost all of the money for every amount of research that has happened for NMO up until this point. As the website states, they have contributed $40 million to support scientific and clinical research since 2008. This was done by just one family. That is HUGE. Saying "thank you" will NEVER be enough for the Guthy-Jackson family. 

So you see, being rare.... isn't always all that rare. My disease is rare, sure. There's not much information out there about it, sure. The treatment for it may suck, sure. I may have relapses, sure. BUT..... there are people out there who are going through the same thing. There are people who may be in the same exact chair as I am right now. Next week when I go to get my chemo, there may be somebody else who is literally in the same seat as me. I always have my family with me. I always have my families support. I have an amazing group of friends who always make sure to pick me up at just the right times. (Good friends are hard to come by, and I have been MORE than blessed with some of the best). And the GJCF.... they make being rare.... not so rare. They help us realize that we are cared about. Unlike some of the other orphan diseases out there, they have adopted us into their hearts and have promised to not stop until we have answers.