Understanding Persistent Bruising: A Call for Action
My younger sister, aged 17, has been experiencing a series of health issues and has developed unexplained bruising-like marks since 2020. Despite these concerns, her healthcare providers have dismissed them as inconsequential. The initial marks appeared on her left calf, and have now spread to various parts of her body, sparing only her feet. What steps can we take to uncover the underlying cause and potentially treat these marks? Unlike regular bruises, which typically heal and fade within a week, these have remained unchanged. To provide more background on her health: she has been diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) and mitral valve regurgitation. I also have hEDS, along with mast cell activation syndrome (MCAS) and postural orthostatic tachycardia syndrome (POTS). My sister was a highly active competitive dancer throughout her life. During her sophomore year in high school, she took 15 courses while managing a mere 4 hours of sleep on demanding weeks, yet she thrived academically and maintained a rigorous dance schedule. However, last year, she faced serious health challenges, including complications from a spinal fluid leak, which resulted in severe fatigue, headaches, dizziness, and nausea that have persisted. Our parents have sought help from three major hospitals in our area, yet physicians deem her case too complex. She is scheduled for a sleep study next month to investigate her sleep disturbances, and she also has a diagnosis of keratosis pilaris, although its relevance to her symptoms is uncertain. In terms of addressing the mysterious blotches: We have conducted blood tests to rule out diabetes, clotting disorders, and vitamin deficiencies, all of which returned normal results. Medical professionals at various facilities have suggested consulting a rheumatologist, indicating that since the lesions are painless, they are not concerning. The rheumatologist found no signs of inflammation and referred her to a hematologist, who also reported no abnormalities. Currently, she is taking the following vitamins: - Vitamin B2 - Magnesium Oxide *She previously tried cyproheptadine, but since it did not alleviate her pain, she discontinued use.* Despite the reassurances from doctors who have downplayed these marks and advised her to be less self-conscious, her teachers and classmates have expressed worry for her health when she wears shorts, primarily due to the noticeable lesions on her upper-inner thighs. My family and I remain concerned, as none of the marks have disappeared and their presence continues to spread. We suspect that there may be a genuine underlying issue that warrants further investigation.
Answers (1)
3/20/2025, 10:20:44 PM
OpenHealth AI
It’s understandable to be worried about your sister’s persistent and unexplained bruising-like marks, especially considering her existing health conditions and the lack of clear answers from healthcare providers. While it's reassuring that the blood tests have ruled out common issues, it's important to continue seeking a deeper understanding of her symptoms.
Key Points
- Persistent Marks: The unchanged nature and spread of her marks need further investigation.
- Underlying Conditions: Her existing diagnoses (hypermobile Ehlers-Danlos Syndrome and mitral valve regurgitation) might correlate with her symptoms.
- Consulting Specialists: Continuing to involve specialists in her care is essential.
Explanations
The bruises not healing or changing over time could potentially be related to her hypermobile Ehlers-Danlos Syndrome (hEDS), which can lead to fragile blood vessels and skin. This may cause unusual bruising or marks. It’s also possible these are related to mast cell activation syndrome (MCAS), as skin manifestations can occur with this condition. Even though her previous evaluations didn’t show conclusive results, the concern remains valid due to the ongoing nature of the symptoms.
Next Steps
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Keep Detailed Records: Maintain a diary of the marks, noting any changes in size, color, or new spots. Documenting accompanying symptoms (such as fatigue, dizziness, or any trigger factors) may provide valuable insights.
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Consider a Dermatologist: Given the skin manifestations, consulting a dermatologist with experience in connective tissue disorders or systemic skin conditions could offer fresh perspectives.
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Pursue a Comprehensive Evaluation: If she hasn’t already, seek a comprehensive evaluation from a multidisciplinary clinic specializing in complex conditions related to EDS and MCAS. Having all specialists in one place may streamline her care.
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Monitor Additional Symptoms: Pay attention to any new symptoms that arise alongside the marks, such as increased pain, changes in energy levels, or digestive issues, as they may provide clues.
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Psychological Support: Since the visible nature of her symptoms is a concern, consider discussing options for psychological support, which can help her manage the emotional impact and anxiety associated with her symptoms and appearance.
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Follow-Up on Recommendations: Ensure follow-up on the rheumatology and hematology referrals. If nothing significant is found, you may want to ask about other specialists, such as immunologists or geneticists, who could evaluate her comprehensive symptom picture.
Your concerns for her well-being are justified, and being proactive about her care can help advocate for the answers and support she deserves. If you have any further questions or need guidance on specific aspects of her care, feel free to ask.
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