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Standard of Care

Disclaimer: READERS ARE WARNED NOT TO TAKE ANY ACTION WITH REGARD TO THEIR MEDICAL TREATMENT OR OTHERWISE, BASED ON THE INFORMATION ON THIS WEBSITE WITHOUT FIRST CONSULTING A PHYSICIAN.

First and foremost, every person with albinism should have an understanding of HPS and inform their physician of its possibility, especially before any surgical or dental procedures. A prompt diagnosis would be wise.

At the moment there is no one particular treatment for HPS though studies are in progress for a drug trial to treat the pulmonary fibrosis at the National Institutes of Health. Beyond that your physician must help you handle the symptoms that may arise. A good understanding of the signs and symptoms of HPS will help you inform your doctor when you might need medical attention.

    You may want to discuss with your physician the following:
  1. The benefit of Health Maintenance and disease prevention including strategies for a healthy diet.
  2. The importance of preventative vaccines including childhood vaccines such as Tdap, annual flu shots, Pneumonia vaccine, Hepatitis B vaccine series, and HPV vaccine (Gardasil).  Ice packs can be used following intramuscular injections to reduce the chance of swelling and bruising.
  3. The use of a MedicAlert Bracelet or other identification to notify caregivers of your bleeding disorder.  The MedicAlert Bracelet should read “Bleeding, Platelet Defect, Blind (not legally blind to save space), Crohn’s disease (if applicable), Pulmonary Fibrosis (if applicable).
  4. The avoidance of aspirin, products containing aspirin, ibuprofen (Motrin), naproxen (Aleve) and any other products, which may compromise platelet function.  Consult your pharmacist with any questions.  For a more complete list, click here.
  5. The importance of good dental care. Your dentist must be aware of the syndrome because some dental procedures may require special medications and precautions.  Dental hygiene is vital to minimize gum bleeding.  Daily use of floss or a Waterpik is essential.
  6. The proper treatment for nosebleeds. Nasal packing should only be done under medical supervision because removal of packing may cause further bleeding.
  7. The benefits of conscientious treatments for upper respiratory infections.
  8. Avoidance of smoking.
  9. The use of Vaseline gauze and/or moist dressings held tightly in place on cuts or abrasions that require coverings.
  10. Treatment options for the heavy bleeding of menstrual cycle.