EDSed Episode 4: Dr. Jacqueline Wolf on EDS & GI Symptoms, Endometriosis
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- Опубликовано: 25 июл 2023
- In episode 4, we talked with Dr. Jacqueline Wolf, a pioneer in the field of women’s gastroenterology. She is a physician at Beth Israel Deaconess Medical Center in Boston, and is Associate Professor of Medicine at Harvard Medical School. Her following has earned her praise as one of the "Top Doctors" by Boston Magazine, as well as listings in Who’s Who in America and Best Doctors in America guide.
In this interview, Wolf gives insight into her research on EDS and other connective tissue disorders and their correlation to GI symptoms and endometriosis. She also talks about colonoscopy safety, what she learned from her Ehlers-Danlos patients, and why she doesn’t want to hear doctors ever say, “Well, dear, it’s just your period.”
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Video Description: At the beginning, two black screens with white and pink text appear: Chronic Pain Partners presents EDSed with Dr. Jacqueline Wolf on EDS & Gastrointestinal Symptoms & Endometriosis. Dr. Wolf, a woman with short, curly dark brown hair is sitting in an examination room, a small room with beige walls and medical equipment on the walls as well as blue gloves. Wolf wears a red shirt, a gold necklace, black glasses and a yellow face mask. In between, we see Karina, a woman with a short pixie cut, white shirt and pink face mask. She sits behind her camera in front of a window which shows we are up high.
About 7-8 minutes into the video Dr. Wolf talks about patients being dismissed. If you are watching this video and feel frustrated because you have experienced this, just know you are not the only one. I was diagnosed with EDS during the 2020 chaos. Basically, the only helpful people were the people at the genetics lab. I have amazing insurance and still ended up spending about $15,000 on various Drs and tests, only to leave with almost zero answers. It can be frustrating, but try and hang in there and remember most of the Drs are just as confused as you are when it comes to EDS and other conditions like it. I am from Massachusetts and was unaware of Dr. Wolf, so I'm happy i stumbled on this video. Thank you for posting it!
Didn’t mention things like Vascular Compressions and Visceroptosis which are two majorly under-diagnosed GI problems with EDS!
The only thing that's been able to effectively treat my EDS-related gastroparesis and intestinal dysmotility is Mestinon (Pyridostigmine). No more cramping, bloating, or any of the other stuff now. Thankfully researchers are repurposing older medications like these to help with other issues. This medication has been a miracle for me!
We were allergic to mestinon. If one of us is allergic, we all are usually allergic to a medication including my husband. It’s really weird. I seriously went through a period of time and thought I married my long lost cousin or something. I didn’t of course. The bad genes just lined up.
@@aspenenglish4976 That's too bad that you're among the few people who are allergic to Mestinon. Do either of you have Mast Cell Activation Syndrome (MCAS) as well?
I became interested in EDS when my whole family came down with gastroparesis. My daughter just had her 9th neurosurgery. She’s had so many problems. I wish someone would study our family.
If you ever find a dr or team willing to do a family study please include our family too. Hugs and strength to you.
@@meredithdannelley202 I will! This has become my battle I will fight!