Hello,

My name is April. I am in the Rising Fawn, GA/ Chattanooga, TN area. I enjoy spending time with my pets, listening to music, being outside enjoying nature, meditating, coffee, and reading.

I was diagnosed with an extremely rare genetic mutation that has caused me to have brain bleeds and white matter disease in my brain. This is due to an amyloid protein that clumps and sticks in my brain's blood vessels and weakens them until then break open and hemorrhage. This brain disease is early onset hereditary cerebral amyloid angiopathy. Mine is early onset because I've been afflicted with this since my late 30s and early 40s which is not common unless it's early onset and genetic. I have endured over 12 years of neurological symtpoms that kept progressing, but my doctors (neurologists) could not figure out or pinpoint what was causing my severe issues. I started having seizures over 3 years ago (possibly longer with focal seizures and I didn't realize that was what was happening) and a lesion was found in my brain upon MRI, but my neurologist wanted to keep an eye on it and didn't seem too concerned at that time even though I had developed seizures. I continued to be monitored, but was still a mystery case. Then, a year later, numerous lesions were found upon the recheck MRI. By this time, my seizures were worsening and becoming very scary, happening numerous times a week, some were mild, some were severe, and I was barely able to work, although I kept pushing myself. During this time, I was also caring for my dad, who was dying of esophageal and lung cancer. My dad passed from the cancer in March 2024. I lost my mom the year prior from a large brain bleed in May 2023. I also lost my job of 15 years as a veterinary hospital manager a year and a half ago and have not been able to work since. I was also a licensed veterinary nurse for most of my adult life and I loved my job so much!

I had brain surgery/craniotomy with biopsy in June 2024, and that is when the genetic brain disease of CAA was finally diagnosed through pathology and genetic testing. My disease is terminal, and I was given 5-7 years due to the timing of my symtpoms and severity of the disease being genetic, but some have lived longer so I am counting on that! There is a chance I could suffer a massive brain bleed and pass away any day. It is unpredictable. I continue to suffer from brain microbleeds off and on, which causes me to have severe transient neurological episodes almost on a daily occurrence. It is debilitating. It causes sudden ataxia, sudden aphasia, stupor at times, extreme tingling and numbness, head pain, severe vision disturbances, inability to walk due to weakness, sometimes nausea and vomiting, cognition challenges, seizures, and other issues at times. Dementia is a symptom and will more than likely occur with further brain damage from the bleeding. Some days are better than others and it is unpredictable. I can be fine one moment and feel kind of normal for me (lol), then suddenly be hit hard and can't function. It depends on where the bleeding hits in my brain. I am heavily medicated and on a large amount of seizure meds and other medications to help control this as best as possible.

I am awaiting an answer on social security disability, but it is taking a while still.

I am currently using my savings to pay for my parent's mortgage and all of my bills, medical bills, essential needs, pet needs ( I have 2 amazing border collies and 2 wonderful orange tabbies that give me so much love), but funds are draining. I am unable to hold a job although I wish I could because I get bored and I miss interacting with people on a daily, but it's not ever going to happen again for me. This disease steals your life.

I am on here asking for anyone who is offering help to people in need due debilitating medical diseases to possibly consider me if able.

I appreciate you reading my story. So sorry it is so long. I just want to help spread information on this disease so people understand it better. Whenever I get asked what I have it is so very hard to explain. I have a medical mind so I fully understand, but it can be hard for others to understand such a rare disease like this. I want to raise awareness the best I can.

Thank you again for listening to my story!

April