Thursday, November 19, 2009


Philadelphia, PA

How has your condition impacted you?  I have had bilateral knee replacements, elbow replacement, wrist replacement, and finger fusion.  The rheumatoid vasculitis causes inflammation of my arteries.  I was the 10th person in the US to try an autologous stem cell transplant for RA.  No medications have worked for me.  I went onto long term disability in January 2009 - after having the disease for 15 years.

What would you want people to know about your condition?  The body truly does adapt to what you're dealt.  My joints certainly don't work the way normal joints do, but my body has figured out how to move about.  Sure I've been forced to slow down, but this also gives me a chance to enjoy other things that I would have easily missed.  It also improves the sense of humor - it's frustrating to try and fail 26 medications and see my body get progressively worse.  So, I have to improve my sense of humor and short attention span.

What would you want to tell someone who is newly diagnosed with your condition?  Be as aggressive with treatment as possible, regardless of the severity of your disease.  RA only gets more and more non responsive, so the key is to jump all over it from the beginning.  Also, find out as much info as you can about the disease and always ask questions of your doctor.  Don't just accept their answer if you believe otherwise.

Thanks Rob!!


kristin said...

he has a great attitude. not passive but ready to take it all on.

minty said...

love that the disease has attacked his joints but has strengthened his sense of humor. probably crucial!

leedav said...

Thanks so much for sharing this knowledge with all of us. I will not take my health for granted.

Leah said...

Totally inspiring. His smile and attitude are amazing. We can slow down physically but we don't have to slow down in spirit!

Thank you for doing this Jodi - you are sharing such important stories. xox

Erin K. said...

He is my brother-in-law and also happens to be the most inspiring guy I know.

Lolabellaquin said...

Rob, it was great meeting you at Rittenhouse Square! Your photo is wonderful!


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