I recently lost my sister #MultipleSclerosis #CADASIL #Lupus #Death #Grief #lossofalovedone
April 23 I learned that my uncle Johnny died when I was at the hospital visiting my eldest sister who passed away April 25 due to MS and CADASIL. She was only fifty seven and we had no idea what CADASIL was or even is, for we are still learning about it. Nevertheless, I was told by her doctors that we (siblings) should mention it to our doctors. I told my neurologist about it and he promptly ordered a brain scan and some other bloodwork. As per Frontiersend.org “Cerebral autosomal dominant arteriopathy and subcortical infarct leukoencephalopathy (CADASIL) is the most common form of hereditary stroke. CADASIL is a genetic disorder caused by cysteine altering mutation in epidermal growth factor-like repeat (EGFr) domain of the NOTCH3 gene located on chromosome 19q12 (1). The core features of CADASIL are migraine, strokes, dementia, and psychiatric features (2). While typical radiographic features of CADASIL include a predominance of T2 hyperintensities in the bilateral temporal lobes and external capsules, the presence of confluent periventricular hyperintensities or other atypical features (e.g., spinal cord involvement) may mimic other diagnoses including multiple sclerosis (MS).” A few years ago I started having seizures and severe frequent migraines in addition to the numerous other illnesses I was diagnosed with by the time I was twenty seven-Hashimoto’s thyroiditis, endometriosis, polycystic ovarian cancer, which led to a radical hysterectomy. I then was diagnosed with fibromyalgia, Lupus, colon cancer, and RA. I have battled with depression all my life, I have two adult sons who have BPD and I am feeling very much overwhelmed at the moment. It all seems too much…but I know that won’t always be the case. I just needed to vent. Thank y’all from the bottom of my heart for this safe space.