Topics discussed in this episode:Being diagnosed at 10 years old with a mystery skin condition.Spending your teenage years covered in boils, warts and having your fingernails falling off whilst at school. Having a failing immune system and constant bouts of pneumonia at 11 years old.Being so self-conscious at school about having your arms or any skin on show it became normal to cover up - even when in fancy dress costume. Being told at 27 to have surgery to remove a cyst the size of a GOLF BALL in your lung then being told by another doctor not to have the surgery because you might die. Finally being diagnosed with Job’s syndrome* or hyper-IgE syndrome a rare autoimmune deficiency typically occurring in people creating skin and lung issues, also dental issues. Finding a quality research hospitalHaving a lobectomy to remove ¼ of her right lung - even though it was risky and doctors were afraid to.Harper never shared anything with her friends until it was time to have surgery, leave work for a few months Harper didn’t find a community of people for some time but when she did she said it was so incredibly helpful and she wished she found them sooner. Treatment for Harper include daily oral drugs, a nebulizer and every two weeks, an injection. These all help with the functioning of her lungs. What’s the best, worst piece of unhelpful advice you’ve ever been given? Does a diet specific to your blood type really help with my condition that you know nothing about? What is the most annoying thing about having an invisible illness? Probably that it’s invisible. No one gets it. Is it right to self advocate and go against doctors advice when it doesn’t feel right to us?Are meds to override symptoms worth the side effects?Entrepreneurship. Should we all be entrepreneurs? Being a life and business coach and helping people start their own business Want to be an entrepreneur? Ask yourself what you like doing and what you’re good at. Don’t overthink it, just do it. Podcasting is an awesome medium for sharing peoples story’s, whether it be people with chronic illnesses, their caregivers, doctors, wellness practitioners, etc. It keeps it fresh and unique. Top tips for starting your own podcastTop book recommendations: Just Kids by Patty Smith and Chronic resilience by Dana Horne (Job’s Syndrome: Autosomal dominant hyper-IgE syndrome (AD-HIES), formerly known as Job syndrome, is a condition that affects several body systems, particularly the immune system. Recurrent infections are common in people with this condition. Affected individuals tend to have frequent bouts of pneumonia, which are caused by certain kinds of bacteria that infect the lungs and cause inflammation. Inflammation is a normal immune system response to injury and foreign invaders (such as bacteria). However, excessive inflammation can damage body tissues. Recurring pneumonia often results in the formation of air-filled cysts (pneumatoceles) in the lungs. Frequent skin infections and an inflammatory skin disorder called eczema are also very common in AD-HIES. These skin problems cause rashes, blisters, accumulations of pus (abscesses), open sores, and scaling.For unknown reasons, people with AD-HIES have abnormally high levels of an immune system protein called immunoglobulin E (IgE) in the blood. IgE normally triggers an immune response against foreign invaders in the body, particularly parasitic worms, and is involved in allergies. However, IgE is not needed for these roles in people with AD-HIES, and it is unclear why affected individuals have such high levels of the protein without having allergies.AD-HIES also affects other parts of the body, including the bones and teeth. Many people with AD-HIES have skeletal abnormalities such as an unusually large range of joint movement (hyperextensibility), an abnormal curvature of the spine (scoliosis), reduced bone density (osteopenia), and a tendency for bones to fracture easily. A common dental abnormality in this condition is th
