Navigating My Journey with Milroy's Disease
Let me share my story. From birth, I've been affected by Milroy's disease, a rare hereditary condition that leads to lymphedema. Throughout my life, I've undergone several surgeries aimed at reducing the swelling in my legs. Between birth and 18, I was regularly seen at Shriners Hospital to address a discrepancy in limb length, but after I turned 18, I had no further follow-ups. Fast forward to last year, I consulted with a rheumatologist who recommended I see a sports medicine specialist. Unfortunately, a family emergency prevented me from making that trip, as it was quite a distance from where I live. Now at 50, I'm experiencing discomfort in my hips and lower back. An orthopedic doctor has diagnosed me with bursitis and bilateral sacroiliitis. They have suggested that I get a shoe lift, but I remember my time at Shriners where they determined my left leg was indeed longer, yet my right hip was higher, indicating that a lift wasn't necessary at that time. My orthopedist is referring me to a podiatrist since I already have custom-made orthotic inserts, and she prefers not to interfere with those. However, my previous podiatrist mentioned I might be too old for corrections to be effective. Is that a valid concern? I'm exhausted from dealing with the ongoing pain, but won't I need to readjust to any new adaptations? How can they accurately assess whether lifters are needed for my situation?
Answers (1)
8/18/2025, 3:51:25 PM
OpenHealth AI
Thank you for sharing your journey and concerns regarding Milroy's disease and the associated challenges you're facing. It's understandable to feel frustrated and exhausted due to ongoing pain and discomfort. Let's break down your situation, address your concerns, and outline some actionable steps.
Main Points:
- Your experience with Milroy's disease and the resulting complications has led to chronic pain, specifically bursitis and bilateral sacroiliitis.
- Concerns about whether you need shoe lifts and the effectiveness of corrections later in life.
- Understanding the assessment process for determining the necessity of shoe lifts or adjustments.
Explanation:
Milroy's disease causes lymphedema, which can lead to imbalances in limb length, posture, and related joint issues over time. Bursitis and sacroiliitis, which you have been diagnosed with, result from inflammation and can cause significant discomfort. Your questions about shoe lifts are valid, especially given your past experiences and concerns about age. While age can influence the response to orthopedic interventions, many adults benefit from adaptations like shoe lifts, especially if they help align the body and reduce pain.
Next Steps:
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Complete Podiatrist Appointment: Go to the podiatrist as scheduled. They can thoroughly assess your foot structure, gait, and how your custom orthotics interact with your limb length discrepancy. This appointment is crucial for obtaining a tailored recommendation.
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Discuss Concerns Openly: During your appointment, express your concerns regarding the potential need for shoe lifts. Ask specific questions about their assessment process and what factors would influence their recommendation for you.
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Pain Management Strategies: In the meantime, consider managing your discomfort through:
- Heat or Ice Therapy: Apply heat or ice packs to the affected areas to alleviate pain and swelling.
- Gentle Stretching and Strengthening Exercises: Focus on exercises that improve hip and back flexibility. Consult with a physical therapist if possible for personalized guidance.
- Maintain a Pain Diary: Keep a record of your pain levels, activities, and any triggers. This can provide insights during your appointments and help healthcare professionals tailor their advice to your specific needs.
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Evaluate Lifestyle Adjustments: While adjusting to changes in footwear can be challenging, consider gradual introductions rather than immediate shifts. Talk to your healthcare team about strategies to ease the transition if a lift is recommended.
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Follow-Up on Your Overall Health: As you navigate these orthopedic concerns, keep in touch with your rheumatologist or primary care provider regarding the full scope of your health needs. If you feel persistent discomfort or challenges, don’t hesitate to ask for further evaluations or referrals to specialists.
This is a complex situation, but with proactive communication and management, you can find the most effective way to reduce your pain and improve your quality of life. Please take care, and know that you're not alone in this journey.
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