My family gives me a lot of emotional support with ECD and the accommodations I need. My response to treatment brings me a lot of hope, as when I first received Zelboraf, I felt immediately better. Along with the research being conducted on a rare disease. View...
Support of my family who will do anything to have a positive outcome. Finding something to look forward to, i.e., Alaska cruise with grandkids in July. Results from next PET scan (April). View PDF
My family is extremely supportive. I have good neighbours where I live and I am hopeful that we can stay on the farm for several more years. My farm animals and the daily farm care routine keep me active and involved. I walk with our dogs nearly every morning. View...
Hope springs from the dedication of doctors tackling my condition and the collaborative spirit among my medical team, all committed to understanding ECD. Their efforts, coupled with positive treatment responses, fill me with gratitude. Additionally, the support from...
The kindness of others has made a huge difference in my life. From the doctors who continue with research, give up their time to come and share at these meetings, the ECDGA providing answers and hope, my family who are constantly concerned and helpful, friends who...
