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.

Hello, my name is Twana. I'm a 54 year old mother of two boys. I've been with my husband over 30 years and we reside in the Southern part of the United States.

In my free time I enjoy shopping, visiting restaurants, watching movies, and doing a little karaoke. My absolute favorite thing to do is travel. I've lived in Germany as a child and traveled to destinations such as the Bahamas, Dominican Republic and Jamaica as an adult.

In 2002, my husband and I welcomed our first born son Tyrek into the world. Around age two he began to be very sick. After years of being misdiagnosed, he was finally, at the age of 12, diagnosed with APDS. Our journey has been challenging with having to navigate a difficult health experience. We have learned that this disease doesn't keep us from living, we just have to live with it.

My name is Tyrek. I am 23 yrs old and currently live in Alabama. My life with APDS has had its ups and downs. It all started around the age of 2 where I kept having recurring fevers and illnesses and my mom didn’t know what to do, which caused me to be in the hospital most of my childhood. in 2013 I was diagnosed at the NIH facility with APDS. Ever since then I have been digging deep to find out more about myself and this disease. I try not to let it hold me back because just cause I’m ill doesn’t mean I can’t push for better in my life. Even though I didn’t experience much as a child, as a young adult I have promised myself to explore and to experience things that my younger self didn’t get to do, like traveling especially outside the country and enjoying my hobbies like gaming and just overall having fun.