Iowa City EDS Support Group Meetings
EDS – IOWA CITY SUPPORT GROUP Contact information: EDSIowaCity@gmail.com
UPCOMING MEETINGS SCHEDULE
Our next meeting will likely be in May 2018. If you are not already receiving email notices about our scheduled meetings, please contact us to be added to our distribution list.
TBD – May 2018
2:00 pm – 3:30 pm
Coralville Public Library
Meeting Room A (lower level)
1401 5th Street, Coralville, Iowa (319) 248-1850.
–>Meeting attendees are asked to park in the lower level garage.
A portion of this meeting will focus on planning for 2018 meetings. Please let us know if you have particular topics you’d like us to address.
PAST MEETING SUMMARIES
Saturday, January 13, 2018
We discussed the value we experience in meeting with and getting to know other EDSers. We brainstormed ways to encourage more people to attend our meetings. We might put together a “get-to-know” video to include with our next meeting invitation.
Potential future meeting topics included:
– watching webinars as a group
– exercise/physical therapy/relaxation
– service animals
– applying for disability benefits
Saturday, May 20, 2017
We all truly appreciated having the opportunity to hear directly from Dr. Pamela Trapane and Dr. Joni Bosch at the Iowa City EDS Support Group meeting held in Coralville on May 20, 2017!
- https://www.uichildrens.org/genetics/
- https://uichildrens.org/pamela-trapane
- https://uichildrens.org/joni-bosch
Thirty-eight people attended the meeting, the majority of whom travelled over an hour to be present. The formal presentation lasted about 40 minutes. The doctors then answered questions for about another hour.
Here is a copy of the presentation: 2017 IC EDS presentation with Pam pdf
If you were one of the people who recorded all or parts of the meeting, please send the recording to us at EDSIowaCity@gmail.com so we can share it with the group.
Here are some general notes from the event.
Trapane/Bosch presentation:
- Slides outline the new 2017 classifications which were updates from Ghent 2012 nosology.
- You do not need to be re-diagnosed. The focus remains on symptoms not on diagnosis.
- Joni went thru 12 Systemic symptoms. Fine tuning, such as different criteria for different age groups (e.g. people’s joints tend to stiffen with age).
- Treatments remain:
- Exercise
- Drink lots of fluids and
- Intake salt, so that you retain the fluids
- Big believer in cognitive therapy.
- Some medical facilities have EDS “boot camps” that require movement and exercise. For example, the Dept of Orthopedics at UIHC (PMR) has an adult program.
Q&A
- Dr. Bahavi (sp?) at UIHC has an autonomic dysfunction clinic.
- EDS presents similar symptoms as does Marfan’s syndrome.
- There is no blood test for HEDS diagnosis. Doctors perform a variety of tests so they don’t miss something rare.
- You can have EDS even when parents do not. Trapane admits that it happens much less this way, but still exists. These types of questions often make good clinical trials subjects.
- Because they have recently hired more doctors, the wait-list at their UIHC Genetics clinic is now at about 10 months. (Down from 2+ years.)
- Don’t wait for your Genetics appointment to have your symptoms treated. Also, don’t hesitate to ask your doctor to arrange 2nd opinions for you.
- If you have an UIHC doctor unaware of EDS, let Dr. Trapane know! She is all about ensuring UIHC is well aware of EDS.
- Pickle-juice can help POTS symptoms…. you might also like Pickle-Juice ice pops.
- Future vision: Recognition and validation of EDS. Getting off the diagnosis “merry-go-round”. Accurate categorization. Improved treatments.
——————ORIGINAL ANNOUNCEMENT——————————————————————————————
We are excited to announce that two distinguished medical experts from the UIHC Division of Medical Genetics* will meet with the EDS-Iowa City Support Group! (* University of Iowa Stead Family Department of Pediatrics and UI Stead Family Children’s Hospital)
TOPIC
2017 EDS International Classification Supplement to the American Journal of Medical Genetics
UIHC SPEAKERS
Pamela L. Trapane, MD
Medical Director, Medical Genetics
Clinical Director, Connective Tissue Disorders Clinic
Clinical Director, Neurofibromatosis Clinic
Course Director, Medicine and Society
Clinical Professor of Pediatrics – Medical Genetics
Joni Bosch, PhD, ARNP
Family Nurse Practitioner
WHEN
Saturday, May 20, 2017
2:00 pm – 3:30 pm
WHERE
Coralville Public Library
Meeting Room A (lower level**)
1401 5th Street, Coralville, Iowa
(319) 248-1850
Saturday, February 18, 2017
Topics of discussion included:
– That the American Journal of Medical Genetics (AJMG) will be publishing of the 2017 EDS Classification in mid-March.
– Ideas for future meetings, such as asking someone from Genetics at the University join us to clarify questions about the published material.
– U of Iowa’s Mindfulness-Based Stress Reduction class
– Experiences with Cognitive and other Group Therapy
– Knee problems. Benefits of water aerobics, stretching and walking.
– Fidgeting in your seat to get comfortable.
– Skin/dermatology issues.
– POTS
– Supplements
– Orthodics and foot surgery.
Saturday, January 21, 2017
Topics of discussion included the following:
– Allergic reactions to meds
– Food sensitivity (sugar, gluten)
– Cost of insurance and meds
– Recovering from the stress of the holidays
– Variances across States on availability of medical cannabis
Saturday, December 17, 2016
We had a great meeting! Hope everyone got home safely in the snow storm!
Topics of discussion included the following:
– Following the Cusack Protocol
– Referrals to Mayo Clinic
– The benefits of having an advocate with you at appointments
– Chiropractors
– Qualities of Vascular- and Classic-type EDS
– Core-strengthening exercise, yoga and diet
– POTS (coping with dizziness and the benefits of salt)
– Raynaud’s in the winter
November 13, 2016:
Some of the topics discussed included:
— the benefits and risks of strength exercising with weights, the pain associated with running,
— weight control and self-image
— Vascular-type EDS medical appointments
— locked joints and how PT helps
— having a bigger amygdala (and suffering with anxiety, fear, PTSD)
— Cushing Syndrome
October 23, 2016: Topics of discussion included the following:
- Emails the group has received:
- Workbook: Invisible Cosmic Zebra collections (invisibleillnessbooks.com)
- Living with EDS: Advocacy services for a fee (livingEDS.com)
- EDS Awareness/Chronic Pain Partners educational series: “An Integrative Approach to Pain Management in EDS”, by Dr. Delia Chiaramonte
- Online research questionnaire sent from a student in Australia
- Pen pal request from child in England
- The degree of EDS we each suffer, and when it started becoming a problem.
- Pain management to include essential oils, real-time pain relief, and CBD oil/products without THD.
- Essential oils and supplements that members have found helpful
- Cusak Protocol and benefits seen by members.
- Benefits of probiotics.
- IBS, food allergies/intolerances, and tests that members have found beneficial.
- How Depression is handled and meds that work for members
- Members impressions of Gray’s Anatomy episode on EDS. Most felt EDS was not accurately and entirely represented.
- POTS issues, how to cope, medications, compression socks, etc.
August 21, 2016: We want to thank everyone who attended the Iowa City Area EDS support group meet-up. We welcomed six new people to the group! Our time together was full of great discussion and the 90 minutes passed quickly!
– The challenges of accepting limitations due to pain and exhaustion. Learning to say “no”.
– The impact of being diagnosed. Working/communicating with your doctors.
– Our experiences with PT, Chiropractors, Massage, Medications and Supplements
– The importance of hydration & salt intake and the impact on appetite.
– The need to move deliberately or risk falling, passing out, nausea, dizziness…
– Daily routine suggestions (showering in the evening, avoiding long checkout lines)
– Challenges at different ages. (modifying School schedules, the effect of arthritis)
– Raynaud’s impact on daily life. (being barefoot, swimming In the ocean, swinging arms while walking)
– Mast Cell Activation. Headaches. Food sensitivities. Allergic reactions.
> The EDS Awareness website. https://www.chronicpainpartners.com/
> The NIH website. https://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome
> Clinical trials and other Research: https://www.clinicaltrials.gov/ct2/results?term=ehlers-danlos&Search=Search
> Difficulties with weight (loss and gain), joint pain/stiffness, dental work, constipation/diarrhea.
> Being diagnosed by genetics (EDS-3) vs rheumatology (JHMS)
> The impact of coffee on top of exhaustion.
> Experiences with D-ribose, probiotics, Gabapetin (Neurontin) and Pregablin (Lyrica).
> Experiences with massage therapy and physical therapy
> Prolotherapy injections
June 18, 2016: The Iowa City Area EDS support group met at the Coralville Library. We had some new faces, and want to thank everyone for coming. Topics of discussion included the following:
May 15, 2016: We have had over 32 people contact us from different websites we advertised on as well as Facebook, and surprisingly there were many that did not know of the Ehlers Danlos Iowa Facebook site, so that was shared with them! The 1.5 hours went by fast, and a few of us were there until 4:00!
