FAQs
    • How do I donate to the Myrovlytis Trust?
       See the ‘Donate’ page      .

    • How do I contact the Myrovlytis Trust?
      See the ‘Contact’ page.

    • What is the history of the Myrovlytis Trust?
      See the ‘About us’ page.

    • What is BHD syndrome?
      BHD syndrome is an inherited genetic disorder.  It is autosomal and dominantly inherited: this means that it is not linked to gender, and that one copy of the defective gene (from either parent) is sufficient.  The gene responsible has been identified (folicullin. See the US’s National Centre for Biotechnology Information for more information ).

    • What are the symptoms of BHD syndrome?
      • There are three symptoms:
              • Noncancerous tumours/lesions of the hair follicles on the skin.  These are particularly prevalent on the face, neck and upper torso and first appear in the second or third decade of life.
              • Lung cysts and an increased risk of a collapsed lung (pneumothorax).
              • Kidney (renal) cancer.

    • Does everyone always have all the symptoms?
      No.  Kidney cancer is seen in between 15%-30% of cases.  Patients have been observed with just skin lesions, just pulmonary symptoms, skin lesions and pulmonary symptoms, pulmonary and renal symptoms, as well as with all three symptoms.

    • Who can get it?
      BHD syndrome is genetically inherited, so anyone whose mother or father carries the mutated copy of the gene is at risk.

    • I am researching BHD syndrome.  Can I apply to you for funding?
      Yes.  In the first instance contact the Trust via the ‘Contact’ page.

    • I am researching a different rare genetic disorder.  Can I apply to you for funding?
      Yes.  In the first instance contact the Trust via the ‘Contact’ page.