1:1 Meetings

Gordon Kelley is the Founder of the APDS Rare Disease Coalition and a passionate advocate for families navigating rare diseases. Living with APDS himself, he created the Coalition to connect patients, provide education, and promote understanding through awareness, collaboration, and hope.

My name is Damian. I am 37 years old and I currently live in the Southwest US. My APDS symptoms have consisted of upper respiratory infections, including numerous bouts of bronchitis and yearly pneumonia, on top of the frequent colds and ear infections, which made for a very sickly childhood experience ever since infancy. In December 2017, I was diagnosed at the National Institutes of Health (NIH), and getting diagnosed has enabled me to be more aware of how to best take care of myself. But my diagnosis is not who I am as a person. It is simply one aspect of my existence. I spend my days working full time, as well as indulging in my hobbies and interests, including Brazilian Jiu-jitsu, cooking, art, crocheting and knitting. I want to see what life has to offer me now that I know how to better take care of myself after receiving my diagnosis.  I am a firm believer in self-advocacy, speaking up for what you need from your caregivers and healthcare providers in order to have a better quality of life.

Hi, I’m Tasmin, I’m from south west England, UK, I am a big empath, and I love to connect to others in all different aspects of life, having a community albeit small in the APDS community has been nothing short of a blessing to me, and I like to do a lot of adaptive hobbies that have surrounded in learning to embrace stillness alongside APDS and other chronic illnesses alongside but I love creativity - especially scrapbooking, junk journaling, diamond art, painting, colouring and anything with an artistic flair, I’ve recently got into drawing too. I love music, and I can play the flute, and I’m also learning the steel tongue bass drum, alongside this I love musical theatre, and I also love history, and if I’m feeling more symptom managed then I like to go to National trust properties or a theatre show, or a gentle walk with my pug Maisie, sometimes adapted with mobility aids and sometimes gently paced. My journey to APDS was a late one. I got diagnosed in 2023 when I was 28 and I’ve had symptoms since a child, and albeit the diagnosis didn’t come into diagnostic criteria until 2013 I’ve been under the care of professionals who found it difficult to pin point the dots until my new immunologist came and ran a blood panel, and now things have been opened for a lot of treatment management and trials in the way of immunoglobulin SCIG therapy, and discussions surrounding Lenioilisib and Stem cell / bone transplant.