fighting the rare fight

Try fighting something other people don’t see. This fight that you and your body just go at everyday, every hour, every minute, every second. That made your mom’s body too tired to fight and took her from you at a young age. That roughly 1 in 36,000 people are affected by, so theres no easy to find *single* specialist to help fight this. I honestly cannot tell you the amount of different specialists, nurses, support staff and so forth I see in a calender year just to cope with the constant battle. These people –who do the damn thing, let me tell you– that constantly fight with me and are learning alongside of me as we piece new results together like a puzzle. And theres these professors that tell students in medical school that they should know what Von Hippel Lindau is but chances are, they won’t see any cases so not to lose to much time on it (I was furious when I was told this by a third year resident). So why would a student want to specialize in or research it specifically after being told this?

There are three clinical care centers (four if you want off of the coast) in the coastal southeastern region of the US. (But a new international care center in Israel recently got recognized, whoop whoop!!) Most of which that are not in teaching hospitals, which is important to me in the instance of that third year resident being able to learn and educate others on VHL. Add the stress of moving to the stress of finding a new team of doctors in a new state while you’ve been at the same hospital since being diagnosed and it amplifies the whole situation. And oh boy, if you have to go through the referral and record gathering, I pray you have more patience than I do. Thankfully, in this instance, for technology to be able to connect with the rare few also coping with Von Hippel Lindau. The VHL alliance has created groups and resources to connect warriors fighting this same fight and I am eternally grateful. Grey’s Anatomy also mentions Von Hippel Lindau and thank you, Shonda Rhimes for making me feel that bit of fame. If you haven’t watched, you’ll love Denny, its brought up in season 7 episode 10 and season 8 episode 10.

     With that being said, what about this pain that wasn’t there yesterday, a new numbness and is this headache actually a brain tumor? Or am I just behind on how much caffiene I’ve usually had by now? When do I know if I need to alert my doctor? Or which doctor do I tell about this symptom? Back to the referrals, which doctor do I contact and do I contact each and every specialist? There’s no easy solution. The next surgery may leave more than just one side of my body numb and lead to more physical therapy. How do you decide on which treatment path to take? Bless the doctors with the patience to reteach someone how to walk. Bless all the doctors with the amounts of patience most seem to have.

     Though the lovely tumors, surgeries and constant MRI’s are not the most fun, it is hardest to not let a diagnosis like VHL define my way to live. I will speak on it in hopes of getting word out about this rare condition. In even more hopes to prevent others from losing their loved ones from the scary rare things. Thank a specialist next time you see one, they’re the ones that hold most Von Hippel Lindau patients lives in their files and smart, thoughtful hands.– linking this for myself, there’s an episode of house I have yet to see 😉 — after finding this link, the episode of House is well worth the watch too.