2022 How to Talk to Your Physician and Make the Most Out of Your Doctor Appointments! - Valerie Slee

This presentation is from the 2022 EDS ECHO Summit: Allergy and Immunology Complications: www.ehlers-dan...
Valerie Slee is the Chair, Board of Directors, The Mast Cell Disease Society, Inc.
"I have served as either the Vice-Chair (2002-2009) or Chair (2009 to present) of the Mast Cell Disease Society, Inc. for the past 19 years. I have had mast cell activation syndrome since childhood, so leading this organization this has been an incredibly fulfilling volunteer opportunity for me. I have also been a pediatric nurse for 46 years in various settings, including pediatric oncology. I graduated from Syracuse University with BSN in 1975. I am married to an amazing husband, have three terrific children and four wonderful grandchildren.
Throughout the years, I have been tremendously humbled working with world-class physicians as well as patients and families. I have learned so much about the many presentations of mast cell diseases, and the tremendous suffering that patients and families endure. The recognition of the role that comorbid conditions play in this suffering has changed the diagnostic and treatment journey for many patients, with much better outcomes. I am honored to be asked to present To the Ehlers-Danlos Society and look forward to further collaboration between our organizations."

[@sainjawoof3506]

Avoid them entirely if possible.

[@marcydrake9159]

Thank you for putting this presentation together, it’s so helpful. 🙏 I’ll be going into my upcoming appointment(s) with more confidence and I bet I get better results. So grateful! ❤

[@Catlily5]

EDS patients have higher rates of autism. Eye contact is difficult for people with autism. To me it feels painful.

[@julierogers4473]

Just diagnosed in April. I'm 58 now. I have 58 years worth of s***. 12 years of intractable pain to fail back surgeries. Now I find this out too late. And now I'm in the middle of Diazepam withdrawal /poisoning due to my idiot pain management doctor. 'd sure like to know how I'm going to have a conversation with this first rheumatologist. After all these years. I'm in so much pain. trip alone loan is going to kill me.

[@TheEhlersDanlosSociety]

I'm so sorry to hear what you're going through, please do contact our helpline at ehlers-danlos.com/eds-helpline/