Mastocytosis

Hi Everyone.      Last year in my quest for a clean bill of health before I got married I decided to have the "spots" I have on my legs checked out.  I've had these "Spots" for about 3 years and my estitician thought they might be sun damage.  Once in a while I would get hives on my legs and it would be VERY itchy but the hives would heal in less than an hour.   After visiting my doctor I was referred to the dermatologist.  He did a biopsy and called me 2 weeks later with a diagnosis of Cutaneous Mastocytosis and to please follow up with your doctor.  The dermatologist actually had recommended a referral to the hemotologist for a bone marrow biopsy to see if it is systemic.    Present time...one year later, I'm going for my bone marrrow biopsy in three weeks but I do not have any systemic symptoms.  I've been told that the "spots" will never go away, I can take a daily anti histamine to TRY and reduce the hives but basically that is all they can recommend, there is nothing the medical community can do.   Mastocytosis is very rare.  I'm hoping that someone there is living with it as well.  I'd love to be able to connect with someone else who has this disease.P.S. if anyone has any advice about how to prepare for the bone marrow biopsy please let me know.  I do not need replies telling how painful it is!!!!

Contact Information:

Canadian Skin Patient Alliance
2446 Bank Street, Suite 383
Ottawa, Ontario
K1V 1A8
 

Sheri Pilon, Program & Services Manager
phone: 613-224-4266
fax: 613-422- 4267
 

pageTracker._trackPageview();