In honor of Worldwide LAM Awareness Month we’ll be sharing information about living with LAM from women we’ve met through our travels and the online patient community in Australia, Germany, the Netherlands, and the United States. You can read more about these women below.
Bree lives in Victoria, Australia. She is 62 years old and was 58 when she was diagnosed with LAM, although had been experiencing symptoms for almost 30 years prior. Bree also has tuberous sclerosis complex (TSC), which is sometimes found in women with LAM. Bree loves to travel and writes a blog about her travels with her sisters called 3 Sisters Abroad.
Kristy is 37 and was diagnosed with sporadic LAM when she was 26. She lives in Mid North Coast NSW, Australia and is a full-time mom to her daughter who is almost 5 years old. She’s had over 260 pneumothoraces due to LAM. She is currently taking the medication everolimus, which has slowed the progression of her disease. We met Kristy when we visited Sydney earlier this year.
Sina is 38 years old and was diagnosed with sporadic LAM at age 36. She lives in Troisdorf in the North Rhine-Westphalia region of Germany with her husband and 6-year-old son. Sina is a teacher, although has cut back her hours to work part-time due to LAM. Sina is on the board of the German LAM Foundation. She loves nature, sport, and music. We met Sina when we visited Berlin and Cologne in Germany last year.
Ine lives in the small village Wijk en Aalburg in the Netherlands. She is 59 and she was 45 when she was diagnosed with sporadic LAM. She had been experiencing symptoms since she was 35. When she was diagnosed, there was no information about LAM in the Netherlands. So Ine founded the LAM-Netherlands Foundation, which is a member of the Worldwide LAM Patient Coalition and provides support to all the women with LAM in the Netherlands. We met Ine and her husband, Ruud, when we visited the Netherlands last year.
Marie-Thérèse is 61 years old and was diagnosed 9 years ago at age 52. She lives in The Hague with her husband. She was in the US when she experienced symptoms that led her to seek medical care and ended up being diagnosed at NIH. She also has tuberous sclerosis complex (TSC), which is sometimes found in women with LAM. Marie-Thérèse has mild LAM. She is a diplomat and currently serves as operational manager of a contact center. She has four adult children. We met Marie-Thérèse, her husband Philippe, and one of her sons when we visited the Netherlands last year.
Bre is 42 years old and lives in Buffalo, NY. She was diagnosed with sporadic LAM when she was 35. She had a lung transplant 5 1/2 years ago and is feeling well. She spends her free time volunteering with cats and at craft fairs.
Dina lives in Reno, NV with her husband and dog. She is 55 years old and was diagnosed with sporadic LAM at 47 after having been misdiagnosed with asthma for 6 years. Her LAM is severe and she is currently on oxygen 24/7. Dina has been taking sirolimus for two years and happily her most recent pulmonary function tests were stable!
Kelly is 58 and was diagnosed with sporadic LAM less than a year ago. She lives in the Atlanta, GA area and has a 21-year old child. Kelly is a teacher, although working is getting harder due to the fatigue associated with her disease. Pre-LAM, Kelly was very active and was even a skydiving instructor.
Maria is 62 years old and was diagnosed with sporadic LAM three years ago at age 59. She is a Mexican American born and raised and still living in San Antonio, TX. She is mother to three children, one of whom sadly passed away three years ago, and Nana to five beautiful grandchildren, with whom she loves spending time. Maria is a patient liaison for the LAM Foundation. Maria is “retired” but owns her own education consulting company and is still involved in training.
Meg is 34 years old and was diagnosed with sporadic LAM in January. Her LAM is severe and she is now on oxygen 24/7 and is also preparing to be listed for transplant. She lives with her husband and 6-year old daughter in Phoenix, AZ. Meg still works full-time, although due to her diagnosis and inability to travel, she had to switch to a different role. Meg’s daughter has a life-limiting neuro-degenerative disease and so Meg devotes all of her free time to caring for her.