Stanard of Care

Disclaimer: READERS ARE WARNED NOT TO TAKE ANY ACTION WITH REGARDS TO 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 medical 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 use of a Medicalert Bracelet or other identification to notify care givers of your bleeding disorder.

2. The avoidance of aspirin, products containing aspirin, and any other products, which may compromise platelet function.

3. The importance of good dental care. Your dentist must be aware of the syndrome because some dental procedures may require special medications and precautions.

4. The proper treatment for nosebleeds. Nasal packing should only be done under medical supervision because removal may cause further bleeding.

5. The possible benefits of conscientious treatments for upper respiratory infections and avoidance of smoking.

6. The use of Vaseline gauze and pressure dressings on cuts or abrasions that require coverings.

THESE MEDICATIONS MUST BE PRESCRIBED BY YOUR PHYSICIAN AND USED UNDER SUPERVISION BECAUSE OF POSSIBLE SIDE EFFECTS AND/OR ALLERGIES.