Join Angela and she share shares her care takers journey. Angela’s daughter Anneliese lives with Blount’s disease. Please be respectful of Angela, and Anneliese’s story.
Blounts disease is where the inner bone of the shin bone fail to develops normally. This happens in young children and adolescents. Causes of Blount disease are unknown. Learn more about Blounts disease here. https://medlineplus.gov/ency/article/001584.htm
My name is Angela and I reside in Kansas. I am a mother to 4 children and a rare disease advocate. I am currently studying for my bachelors in psychology. I work from home as an Account Executive for My City Med and my daughters name is Anneliese
Anneliese was diagnosed with Blount’s Disease, a rare bone disease that affects both legs and due to unsuccessful bracing she has to have surgeries to help correct the condition. She was diagnosed at 18 months old and will be 10 years old next month.
Life changed for me when she was diagnosed with depression. When you hear your child say they are tired of having this condition and would rather just die, it is heartbreaking. Her having thoughts of suicide and being bullied is nothing a mother wants to witness. I never realized the effects medical trauma can put on children so young.
Life changed for Anneliese when she was bullied and her whole mental and positive attitude went downhill. I had to advocate for her and get her set up with school counselors and make sure the school took appropriate action for those kids who were bullying.
Life before the diagnosis was calm. I was a young mother but was not prepared for the journey ahead.
The diagnosis has changed my life by her. She has made be a stronger and better person. She has made me the best advocate I could be and to not be afraid at what life may throw at you. She has taught me patience, and understanding and to pay it forward whenever we can.
A day in the life as her primary caregiver consists of physical therapy, psychology appt. and medications. She is also now part of choir to keep her busy so taking her to practice and being part of her special events. We also have follow up appointments at children’s hospital which is 3 hours away.
The most challenging thing we have faced is not enough answers. there isn’t a set prognosis with blounts. Every time she is operated on the chance of reoccurrence can happen again. We also get stared at in public due to the way she walks. I used to get angry but now if I catch them I try to advocate about the condition.
Keeping up with as in regards to my outside life? I may be busy, but I have learned I need to make time for myself to be a better mother and caregiver for her needs.
To others living with Blount’s disease. The journey may be long, painful and frustrating, but the support is there. Reach out to those who have the condition, ask questions and never be afraid to get a second opinions. We are our best advocates and our own doctors in the rare disease community.
To others who don’t have Blounts disease, We as a rare community need to stick together and support one another. Together we can raise awareness and make our voices heard. We may not be on the same journey path but all of us in a way as caregivers and patients know the effects of having a rare condition not being easy.
Anneliese has undergone about 6 operations so far with more in the future. there isn’t enough research on Blount’s disease nor a supporting foundation for this cause. My goal in the future is to get a non profit started and In the State of Kansas I recently got the governor to Proclaim March 26th as Blount’s Disease Awareness day.
Angela you are correct we do as community need to stick together. Us rarities matter. Thank you for sharing your journey, you are courageous.