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Hurler Syndrome (MPS I H) Symptom Tracker: Your Health Assistant
Living with Hurler Syndrome (MPS I H) means dealing with coarse facial features, corneal clouding, short stature, and more. But here's the truth: Data is your most powerful tool. Every logged symptom reveals patterns—so you can take informed action.
Hurler Syndrome (Mucopolysaccharidosis type I H, MPS I H) is the most severe form of MPS I, a rare genetic disorder caused by deficiency of the alpha-L-iduronidase enzyme. Buildup of GAGs causes progressive multi-organ damage. Tracking symptoms, development, and treatment response (ERT, HSCT) is critical.
Key Hurler Syndrome Symptoms You Should Track
Struggling with symptoms like these? Tracking them reveals patterns, triggers, and how they impact your daily life.
Coarse facial features
Corneal clouding
Short stature
Skeletal abnormalities (dysostosis multiplex)
Joint stiffness
Enlarged liver and spleen
Heart valve disease
Airway obstruction
Hearing loss
Developmental delay/regression
Hydrocephalus
Track Your Hurler Syndrome (MPS I H) Treatments
Tracking how these common treatments affect your symptoms can help you and your healthcare provider optimize your care plan:
Our tracker helps you monitor when you take medications and how they affect your symptoms over time.
Standardized Hurler Syndrome (MPS I H) Assessments
Complete these evidence-based assessments in the App to measure your severity and monitor your progress:
⚡ Knowledge Is Your Superpower
The difference between feeling overwhelmed by Hurler Syndrome and feeling in control starts with data. When you track your symptoms, you transform uncertainty into clarity. Every data point brings you closer to understanding your unique patterns.
It's free to try for anyone—whether you're managing your own condition, supporting a child, helping an aging parent, or assisting a partner. Our tracker adapts to your specific role in the health journey.
How the CareClinic Hurler Syndrome Symptom Tracker Adapts to Your Needs
Adults
Caregivers
Parents of Children
Young Adults
Your Complete Hurler Syndrome (MPS I H) Management Toolkit
Uncover Patterns & Insights
Map your Hurler Syndrome (MPS I H) symptoms like a detective solving a case.
Understand Your Medication's Impact
Turn guesswork into strategy. See how treatments affect your well-being with clear health insights.
Objectively Measure Your Progress
Use clinically validated tools to objectively measure your progress.
Other Tools You May Like...
Plus 2 more specialized tracking tools available
Access All Tracking ToolsAlso Supports Other Conditions Like
Mucopolysaccharidosis Tracker
Mucopolysaccharidosis warriors use our tracker to monitor coarse facial features, enlarged head.
Hunter Syndrome (MPS II) Tracker
Hunter Syndrome (MPS II) warriors use our tracker to monitor distinctive facial features, large head (macrocephaly).
Developmental Delay Tracker
Developmental Delay warriors use our tracker to monitor delayed speech/language skills, delayed motor skills.
Hydrocephalus Tracker
Hydrocephalus warriors use our tracker to monitor Infants: unusually large head, rapid increase in head size, bulging soft spot (fontanelle), vomiting, sleepiness, irritability, poor feeding, seizures, downward deviation of eyes ('sunsetting'), Older children/adults: headache, nausea, vomiting, blurred or double vision, balance problems, gait disturbance, urinary incontinence, lethargy, personality changes, cognitive decline.
Success Stories from Our Community
"This tracker doesn't just collect data - it provides insights. I figured out that I learned my body has warning signs before major hearing loss episodes, which helped me make better daily decisions."
"The most valuable feature for me was the respiratory symptom tracker. When I was ready to give up, but after tracking consistently, I felt in control for the first time."
Take Control of Your Hurler Syndrome (MPS I H) Journey
Transform from feeling like a passive patient to becoming an informed self-advocate. Join thousands who've discovered new insights about their condition.
Designed by people who understand the daily challenges of managing chronic conditions, we're here to support you and your ❤️ ones.
Download Your Hurler Syndrome Tracker NowYour Data is Protected
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References based on studies by: