I live with pulmonary arterial hypertension (PAH), a progressive rare disease that is treated by addressing the symptoms only and not the disease.
After my son was diagnosed with Alagille syndrome (ALGS), my husband and I completed genetic testing and discovered my husband had ALGS too.
Obviously, dehydration is dangerous for anyone, especially if it is extreme. However, for people with conditions like CAD, it has an added level of urgency.
I think it’s important for chronic illness patients to find ways to mentally and physically separate from the fatigue and discomfort they are experiencing.
Being rare not only means you learn to perform new techniques and skills but also that the people around you may have to alter their lives to assist you.
Something I look forward to every summer is swimming. Being in a pool has many health benefits for people with spinal muscular atrophy (SMA).
Multiple sclerosis (MS) made me a member of a club I never wanted to join, and I am going to share my advice with new members.
As an alpha-1 antitrypsin deficiency (AATD) patient, I have low oxygen levels when I exercise, so the very idea of physical activity scared me.
After countless colonoscopies and multiple steroid treatments, biopsies determined I had abnormally large counts of white blood cells.