The funny thing about having an incurable disease

The funny thing about having an incurable disease is that I accept and believe there is no cure. It’s no wonder I’ve never considered being part of a clinical trial before–if there is no cure, they can’t find it.

Further, I don’t kid myself that clinical trials require anything less than really hard (painful and embarrassing) work. Not to brag, but I’m confident that a good 90% of the non-crohnie population would be mortified if they had to answer my routine doctorly questions–let’s not even talk about the doctor’s office gymnastics. It’s hard to imagine what else they could throw at you for a clinical trial for Crohn’s Disease.

There is a love/hate relationship with clinical trials. I think it’s harder for family to accept something bad and they will always look for hope, while patients learn to accept and move on.

More than the honest belief my condition is incurable; I don’t want to get my hopes up for no good reason. It makes you start doing silly things like imagine what you would be doing if you were healthy and whole. What your life would be like. I’m pretty sure that’s illegal; I vaguely remember something in the constitution about no cruel or unusual punishment.

The reason I bring this up is that I came across a clinical trial that looks pretty promising. I tried to imagine what my future might look like if I didn’t have Crohn’s. I tried to imagine what I’d do today or tomorrow if I were cured. I tried to imagine…but I came up blank. What could I possibly do with all that time I wouldn’t spend in the bathroom?? I could start a secret family in a foreign country somewhere! That is how much time I’d have.

There is a center that is doing this procedure in Panama; they are called the Stem Cell Institute. They use stem cells (the patient’s own cells – a totally ethical practice. No babies were hurt in the making of this cure) to treat so many conditions: spinal cord injuries, MS, arthritis, other autoimmune diseases, cerebral palsy, autism, and heart failure.

There is no doubt that these people are doing AMAZING work, but I have to admit that it’s a little hard to watch their videos of their successes. For example, I’d happily scream to the world and enthusiastically share with all my friends the video of their stem cell treatment of spinal cord injuries and how their patients are now learning to walk again (video posted below)! It’s so much easier for me to have hope for someone else than for myself. As soon as they start talking about “me” or patients like me, it makes me uncomfortable.

Hope is a funny thing. People often are compassionate and courteous about a disabled person’s limitations but sometimes don’t understand immediately that you can wield Hope like a weapon.

That said, I really enjoyed reading what the Stem Cell Institute has been up to. If you have the time to check it out, it could be some fun summer reading. I imagine a long vacation in Panama wouldn’t be terrible 🙂

I speak only for myself and my views in this blog. I may haved overgeneralize a bit, but if you see things differently, please chime in. I’d be curious to know what people disagree with me on.


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