MY LIFE WITH GAUCHER
HEAR FROM REAL GAUCHER PATIENTS
This site is intended for US audiences
Living with type 1 Gaucher disease
Talya knows great nurses. The nurse she and her sister had growing up felt like part of the family. Talya even went to prom with her nurse’s son. She still chats with that nurse today, years after their medical relationship ended. So she can get frustrated with nurses who aren’t a good fit for her.
Nurses are almost always such compassionate people. So it can be frustrating when you have to disagree with them. Sometimes they just have different ways of doing things, but we know our bodies the best.
“I learned the process for my medicine from my childhood nurse. She made sure I knew how it’s supposed to be done. So I watch when I have new nurses, and I know enough about the process to speak up."
“One time I had a nurse say, ‘Oh no, the veins in the hands are always so terrible. I’m going to go in the arm,’ and I said, ‘Well, I have no good veins really anywhere, but the best I do have are in my hand. Trust me, I know.’ But she insisted and went in the arm and missed, and then she said, ‘Oh, you’re right.’ I’ve been in my body for 28 years. I know what normally works best for me."
I think an important part of managing your care is knowing what’s going on with your treatment. It’s a good idea to be curious and learn about the process for yourself from your healthcare team. I’ve learned so much from the great nurses I’ve had. That’s what prepared me to move forward.
Talya knows that nurses are the clinical experts. She also knows that she is the expert on her own experience with Gaucher. The knowledge that Talya brings to the table is very important and she isn’t afraid of speaking up.
These are the things that Talya has learned from her own experience, and those are the strategies that have worked for her. Remember that everyone has different needs, preferences, and knowledge. So be sure to stay true to your strategies as you manage your health.
