Why it’s important to maintain your own personal health information, part 2

Last in a series. Read part one.

In the first part of this series, I shared how I compiled all of my daughter Leah’s personal health information (PHI) on the road to her diagnoses. Over the years, that morphed into keeping track of my family’s data as well.

We are a blended family, with a total of eight children: my four biological kids, my husband’s three biological kids, and Leah, whom we adopted together. Most members of our family have some sort of health challenge. For me, that includes Lyme disease, Ehlers-Danlos syndrome, and hereditary angioedema (HAE). Leah has multiple rare diseases, including HAE. Two of my biological kids have EDS, two have angioedema, and most are neurodivergent. It can be a lot to remember.

For my husband and caregiver, Daryl, who is incredibly healthy, it can be hard to deal with and accommodate us at times. Managing all our health conditions has involved countless doctor appointments and therapies. Scheduling, transportation, medications, and other treatments became a constant juggling act, not to mention keeping up with all the information.

Recommended Reading

January 15, 2026 by Leah Sirota

Guest Voice: In my big family, I’m not alone with HAE

Compiling our family’s PHI

Having compiled a mass of Leah’s physical data, I decided it might be helpful for my other kids to have a general health outline, as there is so much to recall. So I made a document for each of my biological children listing their birth data, childhood illnesses, surgery dates, and diagnoses. I also listed my diagnoses and those of their father and grandparents for future reference, especially for the next generation.

As our children have become adults, they sometimes consult me, though they have primarily taken on their own health management. Having their own data file is very helpful. For those on the spectrum, they occasionally still request my guidance on how to communicate most effectively with medical professionals and sometimes ask me to accompany them to appointments or speak on their behalf. Having a file for reference benefits everyone, and getting them used to keeping their own updates is valuable.

Doing for myself what I have done for others

With age, I seem to be acquiring more diagnoses myself, so I make sure to update my own files along with my kids’. They even check in with me about my health, not only asking how I’m feeling physically and mentally, but also suggesting treatments I might try. One may inquire about my diet, another about my exercise routine, a third about my hydration and mobility needs, and so on. It’s good to have physical documentation of my PHI, where I file doctor’s notes, note any questions I want to ask, and list my medications and supplements.

I am happy to see that health and well-being are priorities in my children’s lives, too. I like to think that my influence played a part in that. I have come a long way in my personal health journey and my approach to patient advocacy. I am proud to be weathering this storm of rare disease and to have trained my children well to walk their own paths, even with challenges, toward living their best lives. Updating our medical information after each visit, procedure, or prescription is vital to managing our health and gives me peace of mind.

I believe that self-advocacy, especially in healthcare, is not only empowering but also commands respect from the medical community. Here are a couple of great quotes to remember:

• “Think for yourself, or others will think for you without thinking of you.” — Unknown (though often attributed to Henry David Thoreau)
• “If I am not for myself, who will be for me?” — Hillel

I hope that my experience learning about and maintaining my family’s PHI has inspired you to think more about your own health information and how to best manage it for you and your family.

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.