What would make someone with Osteogenesis Imperfecta choose to have a below-the-knee amputation? It’s a question many in the O.I. community and beyond may never think about, but for some, it becomes a very real, life-changing consideration.
In this #OILife Spotlight, we feature the courageous journey of Rachael Roth, an O.I.er who made the decision to have a below-the-knee amputation to improve her quality of life. Her openness and willingness to share her journey helps break down the myths and fears around amputation and O.I., providing others with a deeper understanding of what it means to live with brittle bones and the hard decisions that sometimes come with it.
Watch the Full Interview
Who Is Rachael Roth?
Rachael is part of the Osteogenesis Imperfecta (O.I.) community and has lived with the challenges of brittle bones throughout her life. About a year ago, she made the decision to undergo a below-the-knee amputation, a decision she did not take lightly but one that she believed would improve her daily life, reduce chronic pain, and increase her independence.
In our conversation, Rachael shares:
- The medical challenges she faced that led to this decision.
- The mental and emotional journey toward accepting amputation as the best option for her health.
- What recovery and adaptation looked like for her post-amputation.
- How living with O.I. factored into every step of the process.
- The lessons she learned, myths she wants to break, and encouragement for others facing similar decisions.
Why Choose Amputation When Living with O.I.?
Living with Osteogenesis Imperfecta often means living with frequent fractures, surgeries, and chronic pain. For some, like Rachael, certain limbs may become a constant source of pain, infections, and immobility, severely impacting quality of life.
Choosing amputation is not giving up—it is, for some, a path to reclaiming their life, reducing pain, and gaining independence.
Rachael discusses how she arrived at her decision after:
- Ongoing medical consultations with her team of orthopedists.
- Experiencing ongoing pain and limited mobility.
- Researching prosthetics and adaptive strategies that could help her live more freely post-amputation.
The Emotional and Mental Journey of Amputation
Deciding to amputate a limb is as much a psychological journey as it is a physical one. Rachael shared openly about:
- Her initial fears and doubts.
- Navigating feelings of grief while simultaneously feeling hopeful about the possibilities ahead.
- The emotional relief she felt post-surgery when she realized how much unnecessary pain she had been carrying.
She emphasized the importance of mental health support and finding a strong support system within family, friends, and the O.I. community during this process.
Recovery, Prosthetics, and Adaptive Strategies
Post-amputation recovery involves:
- Physical therapy to regain strength and learn how to use a prosthetic.
- Occupational therapy for daily living adaptations.
- Finding the right prosthetic fit and team to support mobility goals.
Rachael worked with several key resources during her recovery, including:
Key Resources:
👨⚕️ Dr. Greg Horton (Orthopedist)
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🏥 Hanger Clinic, Kansas City (Brittney McMinn, Matthew Tuttle, Mika Tyhurst)
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🦿 Kevin Carroll, Hanger Clinic
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💪 AbilityKC, Kansas City (OT: Megan Pospisil, PT: Katie O’Neil)
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🌱 Leslie Green, Director of Advocacy and Education, Hanger Clinic
Balanced Amputee | Hanger Profile
These professionals and clinics played a crucial role in Rachael’s physical and emotional recovery, ensuring she had the best support while transitioning to life post-amputation.
Breaking the Myths About Amputation and O.I.
One of the biggest misconceptions is that amputation is a last-resort option or that it is inherently negative. Rachael wants the O.I. community and others to know:
- It’s okay to consider amputation if it means reducing pain and improving quality of life.
- It doesn’t make you any less capable or strong.
- You can live a full, adaptive, and independent life with a prosthetic.
Advice for Others Facing Similar Decisions
Rachael’s message for others in the O.I. community:
- You are not alone. Others have walked this path and found life on the other side of amputation to be better than they imagined.
- Take your time, consult with trusted medical professionals, and seek second opinions if needed.
- Connect with others who have experienced similar journeys to hear real stories and outcomes.
- Explore adaptive strategies and tools that will support your independence and daily activities post-amputation.
Connect with Rachael
Follow Rachael’s journey and learn more about her adaptive living with O.I. and amputation:
Instagram: @rachael.ann.0230
Join the #OILife Community
If you are living with Osteogenesis Imperfecta or caring for someone who is, you don’t have to do it alone. At #OILife, we are spreading awareness, gaining acceptance, and sharing the awesomeness that is O.I., one story at a time.
Join our community for support, resources, live events, and encouragement on your journey with O.I.
Visit www.myoilife.com to get connected today. And find out about Adaptive Fitness Coaching Options with Tony: https://www.tonyjacobsen.com/coaching
Final Thoughts
Rachael’s story is one of courage, clarity, and hope. Choosing to have a below-the-knee amputation while living with Osteogenesis Imperfecta is not an easy choice, but for Rachael, it has been a life-giving one. Her willingness to share her journey helps break down stigma and empowers others to consider what is best for their health and independence.
If this story resonates with you, share it!
