Rare Perspective

I took a long weekend away from writing, but not away from rare. Those of us with a rare disease or who love someone with a rare disease do not get "days off" from it. But this weekend away though all about rare was proof that though you never get a break from rare, it does not define you or your journey. You see, this past weekend I was fortunate enough to attend NORD's Living Rare, Living Stronger Patient Family Forum, it was an event that in hindsight I wish my son was ready to attend and pray that some day he will. It was a time full of friendship, love and hope that comes from shared experiences.

The message that I would love for my son to take away from an event like this would be that though his mother has created her "job" in the rare community, he is so much more than the illness that started all that. In actuality there is little time in our house that is spent discussing Addison's Disease and the affects it has had, but it still in there, underlying a lot of what happens eight years after diagnosis - that is the nature of a chronic illness. He understands that as part of my work in rare I talk about it a lot, as I got more involved I was sure to make sure that he was okay with me sharing as much as I do. But I never want anyone, especially him to feel that I believe that Addison's Disease is what defines him. To define him right now I would he he is a sure-minded, smart young man who brings a unique perspective to how he looks at things and can take emotions out and look at facts, yet is passionate about what he believes in and loyal to those who have been true to him. He has a hard and strong line of right v. wrong that I sometimes do not agree with, but when he argues for it is hard to argue against. He has a huge heart for NBA basketball and dogs. His love language, I like to say, is eating out - but I seriously value any one on one time I get with him to have real conversations. And this weekend we saw so much of what people in the rare disease community have accomplished while fighting many of the same type of obstacles as our son.

I will not compare and say one's journey is easier or harder than another person's, as each person internalizes their journey with a rare and chronic illness in their own way and has different life lenses through which they come to rare. What this weekend did was such a good job of showing us all is that regardless you are more than your diagnosis - just like you are more than your job, your politics, your income, your gender, your faith, your family - all of these are all part of who you are. It is up to each person to put those things in the correct perspective and not to let rare disease take over and run their lives even in the times where it takes more of your time and energy - it still does not define you - you are more.

We saw women who have become business owners, we saw a young man who stood up and spoke on behalf of us all as rare disease warriors. Some go into a field that is related to rare disease - supporting others with then, researching and advocating and others, of course, go in to one of the millions of other options, The key is to live beyond your diagnosis and not let it define you. It may take time to get to that point of acceptance in your rare journey, but it is essential to move forward and look at rare disease as just part of who you are.

Beyond those with rare diseases presenting there were medical professionals and researchers who led sessions that were held at a level we could all take something away from. From looking at the emotional and mental well-being, to family planning discussions to where research is headed, mainly concerning genetics. The work being done is often overshadowed by the work being done in other more common diseases that tend to grab headlines. Let me tell you though, there are people out there who are working for the rare disease community - who have taken an interest in rare disease in general or a specific rare disease and the progress they are making will change the face of rare in the near future.

I encourage anyone with a rare disease or who loves someone with a rare disease to visit rarediseases.org for more information on anything rare disease related. NORD is a wonderful organization that is committed to supporting those with rare diseases and organizations that support them, educating and advocating people about rare disease and making life for those with rare disease equitable.