Stay at Home Mom, Newcastle, NSW Australia

Age: 39 | Diagnosed at age: 26

“Being diagnosed at the age of 26 was very mentally challenging for me. Not long before, I had a relationship status change, moved cities, changed jobs, and decided it was time to get healthy, lose weight and improve my well-being. Three months later, I had abdominal pain that I was going to ignore, which eventually led to my LAM diagnosis.

For me, some of the biggest challenges of living with LAM had been my alcohol usage as a coping mechanism, deciding if and when to date, deciding whether to have children, figuring out how to cope if and why my health declined; and how to cope with multiple partial pneumothoracies (even having five pleurodesis surgeries, I have had over 300 partial pneumos since 2009 – that are still currently happening). On top of that I had to consider my exercise tolerance – and lack of it – which can change on a daily basis, traveling, and getting access to oxygen, finding airlines that can supply oxygen, traveling with a portable oxygen concentrator, finding a travel insurance agent who will ensure anyone who needs to fly with oxygen, and keeping up with a very active seven-year-old.

Being on Everolimus, there’s a constant concern regarding illness and potential risks that a simple “cold” can post. Even though Everolimus has slowed the decline of my lung function, unfortunately, it has not stopped it.

Despite all of this, my perspective on life has improved since being diagnosed with LAM. Before LAM, I was pretty much cruising. I didn’t have many ambitions, other than living out of my parents’ home and perhaps traveling somewhere some time. Instead, I met a wonderfully supportive man, had a baby, bought a house, traveled abroad, became involved in fulfilling ministerial work, and am not afraid to “have the fear” and just go for it! No point in worrying about tomorrow (within reason)! Before we know it, we’ll be old and without any memories worth recalling.

So, we plan, we take extra precautions and are mindful of our surroundings, but we just get on with life. We plan vacations and get out into the world! We educate any and all about LAM in the hopes that our knowledge can someday help another lady like me get her diagnosis faster, and perhaps even one day there will be a cure discovered! But for now, I personally feel it is great to know that there are women like myself who have been diagnosed for 13 years and are still getting on with life. Yeah sure, I may be a little slower than I’d like, but I am still going!”

– Kristy Hope

This excerpt is from Breathe, Just Breathe by Jennifer Fujikawa. Share your own story during Worldwide LAM Awareness Month, tag @thelamfoundation on social media, and use the hashtag #WWLAM to raise awareness for LAM with your friends and family.