My increasing interest in my family medical history
I'm doing more genealogical research since my brother's IPF diagnosis
If you could go back in time, would you want to do it? I’ve given this choice some thought. I would. How would you use the time?
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I hadn’t heard of it. I immediately began a crash course in the disease. The shock of learning pulmonary fibrosis (PF) was a chronic, progressive illness with no cure was a lot to absorb at the moment. The designation of idiopathic, meaning an unknown cause, made it more of a mystery.
I knew my father had chronic obstructive pulmonary disease. My brother Mark’s recent diagnosis of IPF reignited my family history research. If I could go back in time, I’d want to learn more about the generations I never met.
My paternal grandfather, a World War I veteran, was born in 1893. His first wife had passed away in 1950, and I only knew him and his second wife. I always considered her my paternal grandmother, even though we weren’t related by blood. I met my maternal grandfather on only one occasion; he broke off all contact with my mother and her brother. As for my maternal grandmother, she passed away at 85 years old.
Of the relatives I had contact with, none but my father had a respiratory illness. The first use of oxygen for acute care was in 1885, to treat a young patient with pneumonia. I thus wasn’t likely to find family photos of earlier generations who were using oxygen.
I didn’t develop an interest in genealogy until the early years of this century. Now I’ve spent years looking at my family history. I used several commercial sites with some success and found WikiTree to be the most productive. I describe the site as genealogy crowdsourcing. It promotes itself as the place “where genealogists collaborate.” I have other family members using the site, and we alert one another when we discover information.
It’s the closest I can get to going back in time. Still, I wish I knew more about the generations before me on both sides of my family. I’ll continue to try to develop my knowledge about my family history.
The future is now
My family will have full access to my medical history. Now that there’s an apparent familial PF link, given my brother’s diagnosis, I want no medical secrets. Two generations already follow me in the family.
My children, Christopher and Heather, have been on this IPF journey with me. Of my three granddaughters, only the oldest, Abigail, has witnessed part of it; she was born about one year after my diagnosis. My two youngest granddaughters, Charlotte and Brooklyn, were born after my bilateral lung transplant in July 2021.
I want them to have all the information I have about my illness by sharing everything I learn. I imagine there’ll be a future generation of my family that doesn’t have to know about any form of PF. Learning as much as I can about my family history, sharing my journey, and contributing to research is my responsibility. It’s how I can make every breath count.
Have you looked for connections in your family medical history? Are you openly sharing your health journey with your family? Tell me how in the comments.
If you’re in the U.S., make your voice heard and exercise your right to vote.
Note: Pulmonary Fibrosis 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 Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
About the Author
Comments
Steve Mobbs
Some family death and disease stories are like mine…not so well defined.I am the youngest of 8 and diagnosed with IPF in 2017.
I have lost three siblings from pulmonary related causes but not defined as all three refused to share any medical issues with the family.
I have soft balled with my kids and will probably share more as I decline in health.I personally am somewhat reserved about sharing as the science of IPF suggests because they don’t know the cause of IPF there is nothing you can do to prevent it and nothing you can do to make it go away.There is no reason to believe my children will get IPF so why alarm them
It appears your sharing and openness has brought you some peace.I salute you for that.
Lorna
Hi there, I'm from Wales UK,
I have just been diagnosed with IPF, and I am devastated, I have just turned 57, the only reason they found out i had IPF, was through having a COPD assessment as my Mother and Auntie both died of it, my mother was my age when she found out she had COPD through smoking same as my Auntie. I smoked for 30years gave up for 10yrs and started again 6yrs ago i am in a program to give up through the help of tablets. I myself couldn't do the COPD test so my nurse sent me for an xray, it came back and I had to have a repeat xray in 4 weeks. The second xray confirmed that I had a expansile lesion in my right rib, my doctor said it could be cancer and a CT would confirm this.
I booked a private CT straight away and the results came back I had IPF. What a shock that was as I was only having a CT for a Expansile Lesion in my bones, this was the biggest shock ever, I never heard of IPF/ILD. I have been reading up about it all, the Dr hasn't said anything about the Lesion so i have that to come, whether its cancer or not.
I have been worried whether it was familiar IPF, as my daughter has Rheumatoid Arthritis and they say that with IPF you have an underlying illness, Rheumatoid being 1 of them. So finding out if it is hereditary is a must for me.
Treatment in the UK is just the 2 tablets that we all know about.
A lung transplant is not offered until its too late or you reach age 60, and depending on if you have any other illnesses and your fit and healthy not obese or have diabetes etc etc.
I have only just heart about the trials for a treatment of IPF and I hope the Uk will look at all the results from the trails, as that would be amazing, as I don't want too die I'm far to young as I have my children, grandsons, step granddaughter's and step granddaughter and grandson, ranging from 2 years old to 17 years old, I'm a young Nanna, I'm always having the G/kids running around and play fighting doing everything I can with them, I'm like a mad nanna so nope I'm not ready to leave this world.
I had some symptoms like being tired and fatigued, but I have fibromyalgia, and I put it down to that. I lost a lot of weight 2 stone 9 pounds, 2 yrs ago I put that down to stress and my partner dropping down dead in front of me, so I've had a really bad 2 yrs, and this to top it off. So any information I can get about IPF and about any trials, keeping a close eye on that.
Anyway thank you for reading my letter, and I hope everyone is doing well. Thanks again Lorna
Donald F. Mackay
What is the probability range of father to daughter IPF infection? Thank you.