Pam’s Story

Oct 10, 2022

My name is Pam Hodge. I have Mastocytosis. This diagnosis has been a struggle to get and to have! I have a husband that is an amazing human, he gets me through most of my crazy situations I find myself in. I am incredibly lucky to have a solid/unfaltering partner who always has my back. 

I got ill around 2010 and was seen by a rheumatologist because I have a high ANA indicating an autoimmune disease. I was thought to have Lupus and that was later changed to mixed connective tissue disease, which I still have. The treatment for both of these diseases is Plaquenil. I was taking Plaquenil when I had a huge rash appear and had my first anaphylactic event. Little did I know I was not just having an allergic reaction to the medication but my first clues into the rare disease that is Mastocytosis. 

I was diagnosed with a mast cell disorder in 2012. I have lived a few years in the Mastocytosis “camp” then in the unspecified mast cell disorder “camp”, then the MCAS “camp” and after a 10-year, frustrating and meandering diagnostic journey, a Mastocytosis diagnosis was recently confirmed.  I do have a unique perspective as I have had both diagnoses. I find that MCAS patients may not get the attention from doctors that they need and that Mastocytosis patients are not believed because it is so RARE! In each case, I felt unbelieved by medical personnel as to how sensitive I am to food, medication and environments. I have had to advocate for myself in so many situations that it could have been dangerous if I did not explain myself clearly. Each one of us is unique and our illnesses are vastly different, making it hard for the doctors to grasp an understanding of the diseases. I am so thankful for the doctors that do understand and do help! 

By nature, I want to help people. I wanted to help people in the online Facebook support groups but found myself repeating a lot. I was also struggling with my own illness, which as we all know can be a full-time job. So, for the next few years I decided to take good notes and write a book that would give people an insight into my PERSONAL life and what struggles come with a mast cell disorder. I finished my book in 2014. It has helped others to know where to look for answers and assure them that they’re not alone. It has been sold in several countries, so that is cool! It has been discussed at a medical conference…so that is exciting. Doctors are listening, which is extremely exciting! 

This 10-year journey I am on seems like it has just begun as I am having to go through the acceptance process all over again. I am having words like chemo mentioned to me which is creating new anxieties. All of which I am familiar with, but now I cannot hide from it. I do, like everyone else, have the hope of a cure someday! I appreciate the help I receive from people that have been in my shoes. This long journey demonstrates that we all need each other and the importance of being your own advocate, so do not give up!