Raising Awareness

Sometimes I feel like it would almost be easier in a way to have Katie diagnosed with a disease that is so well known.  Before anyone gets offended, what I mean by that is certain diseases are so well known that there are protocols, treatments plans, and success rates already in place.  If Katie were to have been diagnosed with something that isn't so rare, the fear of the unknown would be a little less.  I know there is fear of the unknown in every disease out there, as far as not knowing how sick you will get, but battling a disease this rare is like flying blind through a snow storm.

Several months ago there was the ALS Ice Bucket challenge to help raise awareness for that disease, which is also very rare.  I would love to find a unique way to get the word out to the masses about Castleman Disease.  So many people ask daily what is it, how did she get it, how do you fix it, and many other questions.  One of the biggest issues (aside from there not being a cure yet) is that no one knows enough about this disease, including the doctors.

Katie is so very blessed to have an amazing team of Doctors and researchers we have met through this disease who are determined to cure this.  They are actively fighting this disease through research, clinical trials, and raising awareness.  Without their hard-work, personal battles with this disease, and determination to fix this, Katie's future would be even more unknown.  I have learned so much about this disease and have become actively involved in this disease through them and could not be more thankful.

Help spread the word and educate yourself on this disease.  Yes there are so many unknowns, but if each one of you learns a little more about this disease today, that is one more person who is no longer in the dark.  So many people are battling this disease from Katie's age all the way to the elderly and each battle is different and just as scary.  Help make a change by not only educating yourself on this disease but by raising funds for the crucial research studies needed to be done.

Visit www.cdcn.org to learn more about this disease and learn how you can help.