Q&A 1

I have posted my blog link to the WHIMS community on RareConnect.org (a link will be added at the end of this post). Since then, more people have viewed my blog. I wanted to thank those people and hope that this blog will help them. I have also received my first questions for the blog (yay!) from that site.

Rob Pleticha says: 

Hi Caitlyn,

Thanks for sharing your blog here. Putting a face on WHIM syndrome and raising awareness will help inform the wider public about what is like to live with WHIM. How old were you when you were diagnosed? What is the right balance of treatments that helps minimize infections?

Dear Mr. Pleticha,

I hope this blog will grow and turn into something that will help those without WHIMS understand what it's like as well as help guide those with WHIMS. It is people like you and others at RareConnect.org that are a huge part of my goal. 

I was diagnosed at the age of 12 (2006). Two years before I was diagnosed, the WHIMS gene was isolated at Mount Sinai Hospital in NYC. After the gene was isolated, my many (many!) doctors put 2 and 2 together to diagnose me. 

As for medications, I am currently on a weekly at home treatment of immunoglobulins to boost my immune system. I set up the medications myself and administer it subcutaneously.

I hope this answers your questions. And as for everyone, let me know if you have any questions.

Thank You!!

Introducing Me & My Purpose

I am warning you now that I really don't know what I am doing. All I know is that I want to get my story out to the world and hope I find others who have the same issues as I do. I'm not talking about "One Flew Over the Cuckoo's Nest" issues, but medical ones.I should probably now take a little time to explain what I'm talking about so I don't seem like I belong in the Oregon State Hospital next to Mr. Nicholson.

I have a rare, genetic immunodeficiency known as WHIM Syndrome. I know the word immunodeficiency seems like a big word (I felt like Nemo trying to pronounce anemone when I first heard of it), but it simply means that I have a problem with my immune system. More specifically, my body has trouble creating white blood cells to fight infections. Of course, as a result, I become sick easily and have spent much of my life in a hospital (not to mention the dozens of medications).

Now you are probably wondering why I am telling you this and no... this is not just some stupid sob story. I want other people out there in the world who are struggling with the same or a similar illness to know they are not alone. I have been dealing with this problem since birth. I know that it can be difficult to deal with, but it is worth the fight. I have been fighting for 18 years and have no intentions of giving in. If anything WHIMS has made me the strong, independent person I am today.

Throughout this blog I will share with you my journey through college and dealing with my illness. Just remember... you're not alone.

Please feel free to leave comments or questions. I will do my best to answer them.