“My name is Brenda Fregger, I was in my mid 30’s when the first symptoms of a rare incurable disease emerged; it took six years, five doctors, nine orthopedic surgeries, four rare disease specialists across the US and the discovery of a rare gene I was born with that laid dormant until I was in my 30’s. It attacks my soft tissue and cartilage, randomly and spontaneously tearing my tendons. This disease is so rare few doctors have heard of it, even fewer have seen or treated it and no other person has it; it doesn’t even have an “official“ name because I do not fit into any known disease, so it’s called an orphan of a rare HLAB27 autoimmune disease. My prognosis was devastating; the damage to my joints will be so severe I’ll be in a wheelchair in my 50’s. I refused to accept that and found a better doctor!
I go through frequent painful stem cell procedures and physical therapy, take an arsenal of disease modifying medications with horrible side effects and my wardrobe often includes one or more orthopedic braces. My life is saturated with doctor and lab appts, MRI’s, procedures, long recoveries and painful physical therapy. It invades every aspect of my life, but my life is full and happy and in many ways, completely “normal”! 14 years past the predicted arrival of a wheelchair and I’m healthier and in better physical shape and that wheelchair… is nowhere in my future!”
I have no control over my disease, I have to live with it and had to figure out how to do that. It was either be a victim of it, lost in self-pity, miserable waiting for the wheelchair OR find the strength and courage to fight this disease every day to live the best life I can!