I don't know how you do it...

This blog post served as an inspiration and rallying call for me on what's been a tough morning in a series of tough mornings.

The IDF Conference tends to make me quite introspective and thoughtful about my (this is the first time I've actually typed these words and I just might cry) disability. Yes, it's a disability. Yes, it's difficult. It can be overwhelming and lonely, but I try my best to not let either thing get me down.

It IS a lonely disorder, because even at a conference full of people who have problems like yours, no one's problems are the same. Some are better, some are worse. While people are around that "speak your language," it's hard because you're still the only one fluent in "you." I know that is a difficult thing for most people to understand, and it's a difficult thing to explain. There's a desolation in knowing that you're the only one.

A dear friend has a colon issue and has yet to find anyone in the world with the same dysfunction. Expert physicians have heard of it, but no one can say they've actually seen a patient with the problem. That is lonely. Not a single person. This is not just presentation, this is entire disease diagnosis that she can't find anyone to share with. That's even more lonely.

But what does all this mean for daily living?

With rare orphan diseases, people are often sympathetic to what you're going through. I often hear "Well, I shouldn't be complaining to YOU about xyz illness thing I have going on. You have enough stuff to deal with." I do, but it's nice to know that other people get sick too. Granted, it's on a whole different scale, but sometimes it's nice to know that other people feel like crap.

I like to know that my experiences can help someone else, so I am happy to offer advice on OTC cold medication or explain the possible side effects of antibiotics. It makes me feel more like a whole person and makes my experience a lot less lonely. I may never get the sense that I feel normal or like everyone else, but, then again, who feels that way?

I am happier now than I've ever been, even with the struggles and challenges of illness. It's not easy, but there is a lot to be said for getting through. I do it because I still can, gosh darn it. I keep putting one foot in front of the other because it feels good to have a victory, however small it might be.

Numbers

As I mentioned, I went to several sessions at the IDF conference related to SCID and the recent initiatives to make SCID testing a regular part of infant heel prick screening. In these sessions, I learned about outcomes and prognosis for children who get diagnosed early. Those outcomes are great. There is a lot that can be repaired with Bone Marrow Transplant.

Then you look at older children at the time of transplantation and the outcomes are rather more bleak. This is sad to me because it would take only a little to get these children tested and treated early.

I read today about this little boy in India. His parents are struggling to get him a transplant at the age of 2.

I really hope he is able to get the transplant from his sister and beat the overwhelming odds against him.

Indigestion

I thought I would post more about the conference and the wonderful things I learned. Well, I had the best intentions, but it just didn't work out that way and I wondered if there was some greater reason.

I was hoping it may have something to do with the fact that I've been stressed by external issues, and I really wish I could blame that. I feel strongly that there's something deeper at work. I just feel like I have a form of brain indigestion.

Uh. What?

Well, I think there has just been too much information uploaded to really be able to distill the valuable things yet. I am trying not to be too hard on myself, but that is a really challenging thing to do. It is difficult to explain properly. My mind feels like a brita pitcher. the top is full, and is slowly dripping down to give me the information that is most useful to me. I am working on it and will post about things I learned, but right now, it's just a little overwhelming. I know I learned things that were a relief as well as things that are a little scary. Eventually, I will share them with you. I promise.

Hi From Phoenix!

Hey Guys!

I didn't forget about my blog, I'm just moving... and traveling... and now I'm in Phoenix for the Immune Deficiency Foundation's 2011 Conference. I'm here for patient education and connection with others. It should be a great time. I'll be posting some reactions to things I learn and hopefully will share some helpful things with you. In the meantime, here's a lovely photo taken from my balcony about 5 minutes ago... :-)



Nice view of the golf course, eh?

GOP Governor Kills Babies In Florida

Oh? A little too much? Well, it's true. Experts estimate that 8-10 babies will die in Florida this year due to Severe Combined Immune Deficiency. Republican governor Rick Scott vetoed the testing to be "fiscally conservative." Read more about it here.

Again, politics has made it easy to be penny-wise and pound foolish. The measure would actually not only save lives, but also save money in the long run. Young babies can receive bone marrow transplants that will cure them and be relatively cost effective. Let's use the high-end bone marrow transplant cost estimate: $200,000 (according to the National Bone Marrow Transplant Link). If the child doesn't get the transplant, IVIG would be necessary. That can be $10,000/month or more. So, if treated early with BMT, there are very good outcomes for children with SCID. The ones who would get IVIG (if they lived that long)? Not good. Lots of hospitalizations and early deaths.

This just really doesn't make any sense. If you're interested, you can encourage Governor Rick Scott to follow the state's official advisory panel's unanimous recommendation here.