Best Advice from Mama Bear Anne Jacobs

Hi, my name is Anne Jacobs, aka Mama Bear. I have been a Rare Disease Mama for 29 years now. My journey started when my daughter, Candace @thisporphyrialife, began symptoms that no doctor could diagnose. She was 13 at the time and is turning 42 this month. She was finally DNA diagnosed with Hereditary Coproporphyia at the age of 31. Porphyria destroys the entire body and is incurable. One symptom while in an attack is brain fog.

Today I will not go through the long journey and suffering my daughter and I have been through. I want to tell you what advice I have if you are a Rare Mama or Papa with an older child. Candace and I have argued over the years about her care as she lives on her own. The best advice I could give a parent who still has to be there for their rare child is TALK! It is so important, to be honest with one another. Share your feelings and fears with him or her and let them tell YOU what THEY need. The most important thing I have learned by doing this is waiting for Candace to ask for help. You may think they need it before that, but they are adults, and they need to feel independent as much as their disease/disability allows. Let them feel needed as well by not holding back any illness that might be affecting you. They need to feel “normal.” Thank you for listening!

Guest post by Anne Jacobs, Caregiver Advocate This Porphyria Life, and Rare Mama to Candace

thisporphyrialife.com