On Wednesday Mike and I had an amazing experience. We were invited (thanks to the incredible Dr. Ted Steinman at BIDMC and HMS) to discuss our experience with PKD in front of a group of students enrolled in an intensive class: HMS TransMed: Identifying Unmet Medical Needs and Translational Solutions. Mike discussed his experience with the disease and I was able to speak to the effects of PKD on a patients family.
The experience really highlighted two things in my mind:
1) PKD is, sadly, an example of a disease that desperately needs attention and has so far defeated the efforts of a small, but dedicated group who have been seeking a cure. There is no cure for this disease, one of the most common life-threatening genetic illness. It continues to wreak havoc on generations of sufferers.
2) We, Mike & I, are incredibly lucky (an odd thing to say when facing an uncertain future) in that we have proper health insurance, access to the best medical care, and, perhaps most importantly, an incredible support network.
Thank you, again, for your support as we navigate our way to a healthy future for Mike! And if you want to do anything for other PKD patients, the PKD Foundation could use your help as well. We were very pleased to hear the panel of experts in the class speak highly of the organization!
Have a fantastic day -
Samantha & Mike