Why PC Medfolio?
I have two children, both with multiple rare diseases which resulted in chronic conditions. Add to the equation that my husband has type 1 diabetes and our house has experience with nearly every type of ‘ologist.’
My kids are still young and their health problems climaxed during the pandemic - a time when my husband did not feel comfortable leaving the house. I was the sole caregiver on the journey to diagnosis for our son for the first 2 years (yes, in total it took just over 3 years to solve – if you haven’t had this experience this diagnosis journey, this was a quick outcome for a rare disease).
The diagnosis journey was painful and filled with binders full of papers, wrong turns, and more. I played characters at the doctors’ appointments, the stay-at-home mom, the working mom, and the daughter (I brought my father hoping that with 3 generations in the room, we’d get taken seriously).
The more I read, researched, and became a part of this community the more I was troubled by the fragmentation of the healthcare system. Along my son’s journey, there were multiple misdiagnoses, unfilled prescriptions for painkillers, vitamins, and other band-aids. I put hours into assembling a cohesive medical picture upon meeting doctor after doctor, downloading data from multiple portals and creating comparison charts. I created a 34-month symptom journey with all the doctors we had seen.
As so many doctors told me, they didn’t have time to read his binder. We would go to the appointments, and they would ask me questions about my son’s health history. I would try to answer properly but with two medically complex children; it was very difficult to keep symptoms and timelines straight.
Ultimately, I took all of my son’s symptoms, charts, and utilized Chat GPT to find a diagnosis. He was formally diagnosed 2 weeks later and had surgery 5 weeks after I had found the ‘problem’ as we called it. My son is doing wonderfully today, he has other health issues due to the length of time it took to get diagnosed and we are working through those now, even with those issues – he is 1000% in a better spot today than he was before surgery.
While Chat GPT is credited with solving my son’s ‘problem’ … I truly credit a comprehensive medical file as the reason we found his diagnosis.* I hope someday to include artificial intelligence in PC Medfolio to allow others to utilize AI in a similar way that I did and I am closely watching legislation to implement it at that time. Today, we are offering the opportunity to create a consolidated health file with the ability to allow coordination of care between caregivers (parent, grandparent, paid caregiver, etc). The two things I MOST desired through the process of my son (besides an actual diagnosis).
While creating PC Medfolio, the realization that this could not only be used for diagnostic events like my son but also for the management of chronic conditions like my daughter's. So we** developed PC Medfolio to create the longitudinal health file, a symptom calendar, allergy lists on demand (including derivatives), emergency instructions, caregiver notes and handoffs, doctor visit preparation and notetaking, everything a caregiver or patient can use for a complex health problem. I am proud of what we built and after reading so MANY patient stories just like mine I know that PC Medfolio gives us (patients, parents, and caregivers) back control of our health story. I hope you enjoy using PC Medfolio, tell us how you feel here.
*And my daughter’s too…she was lucky enough to stay in the same healthcare system for her entire journey and I really believe it aided in diagnosis, she has more rare diseases than my son but was diagnosed within 6 months for each one as we peeled back the layers on her.
In good health,
Courtney Morales Hofmann
**About us to see our awesome team members