Frequently Asked Questions
Individuals affected by PXE have asked many questions over the years on the PXE chat list about living with PXE. These questions have been answered by the PXE Professional Advisory Board and are compiled here for your information.
- What is PXE?
- General FAQ - Symptoms, treatments, find and educate your doctor
- Eye FAQ - Bleeding and vision loss, eye treatments, restrictions to activities
- Skin FAQ - Plastic surgery, laser treatment
- Cardiovascular FAQ - High cholesterol, intermittent claudication, stroke
- Gastrointestinal FAQ - GI bleed, inflammation
- Research FAQ - Current research, online research questionnaire
- Inheritance FAQ - How PXE is inherited, genetic counseling, genetic testing
- Genetics FAQ - ABCC6 gene and protein function
- Women's Issues FAQ - Birth control, pregnancy risk
- Insurance FAQ - Insurance denials, diagnosis code, social security
- Clinical Trials FAQ - IRB approval, FDA registered, animal testing, repurposing, phases, risks, side effects, benefits
- Magnesium FAQ - role of magnesium in the body, dietary supplements, magnesium clinical trial in treatment of PXE
- Bisphosphonates FAQ - definition, function and persistence in the body, side effects, use in treating PXE
- Sodium 4-Phenylbutyrate (4-PBA) FAQ - mechanism of action, side effects, use in treating PXE
- PXE Magnesium Clinical Trial FAQ - Two-year, double-blind, placebo-controlled clinical trial testing magnesium supplements as a treatment for PXE
- Other Health Questions FAQ - Calcium intake, smoking, alcohol
Most of these FAQs are replies to general and specific questions which have been submitted to us in the past. Our responses may not apply to any particular individual´s situation and are not a substitute for medical advice given by a physician who is familiar with the individual´s case and who has examined the patient. In addition, the responses are updated on a periodic basis but may not be current.