Leaders In Eczema Forum Went Off Without An… ITCH!

Well… maybe there was some itching!

We laughed, we cried, we vented our frustration and lets be honest…we itched.

Nevertheless it was an incredibly inspiring opportunity, bring together expert doctors, patients, parents and people from all different walks of life. More importantly, heavy topics were analyzed and discussed.

The Leaders in Eczema Forum took place at the gorgeous Hess Center for Science and Medicine at Mount Sinai on October 1st, which was the perfect day, as we honor Eczema Awareness Month!

For those that weren’t able to attend or don’t live in the area, no worries! I will give a rundown of the days events!

Now lets get started…

8:30am – Registration
We mixed and mingled in the lobby as we were warmly greeted by Julie Block, NEA’ President and CEO, Karey Gauthier Associate Director, Lauren Hewitt Events and Marketing Director and their staff. As we checked in, we were gifted with cute tote bags filled with products and our name tags.

9:00am – Welcome
As energetic as ever, Julie Block the NEA President & CEO brought down the house with her humor. The two words she emphasized in her speech were “Courage and Empowerment.”

Great time of hope ~ Julie Block on eczema solutions

9:15am – Inspirational Speaker Kathy Sage
Kathy Sage’s father had eczema and the gene had been carried throughout her family (except her sister) and passed onto her kids. She expressed how she missed out on a lot of experiences growing up as a child, such as finger painting and writing for fun. She mentioned she scratched her skin so much people thought she was hurting/harming herself. Her darkest times were in college and grad school, as the medicine she was taking caused her to become sleepy.

There’s nothing I can do for you ~Kathy Sage’s Dermatologist

*Biggest Hurdle – Kathy had been denied 2 (possibly 3) times to be a candidate for a eczema treatment drug. She will continue fighting insurance companies on this matter, as she wants her pain to go away.

9:45am – Decade of Eczema – Mark Lebwohl

He has an encyclopedia knowledge in dermatology and internal medicine ~ Dr. Schultz

Dr. Mark Lebwohl did a great job of presenting us with a timeline of treatments used to treat eczema and psoriasis. He opened the presentation with his adorable grandchildren and mentioned “all they had was pills back then.” He showed us studies of how eczema affects your ability to get a job (SO TRUE), and how divorce among adults dealing with atopic dermatitis or a child suffering from it are high. Then he explained the ‘Easy Score’ – a measurement of eczema on a scale of 0-72 with 72 being the worse.
*Info That Stood Out
– Cyclosporine which is HIGHLY controversial and has terrible side effects such as kidney damage!
– IL17 and the correlation to inflammation and how it causes chronic inflammatory and auto immune conditions.

10:45am – Emma Guttman MD, PhD

Dr. Guttman highlighted all the new research and multiple studies having to do with eczema. She talked about filaggrin, a vital protein used to protect skin and how those with eczema may lack this protein. She mentioned how in the past, lots of treatments such a phototherapy were not convenient for patients. Especially if they had to go multiple times a week. The drug featured heavily in her talk was dupilumab. She explains how it targets one specific molecule, that helps treat the eczema.
*Takeaway – There are lots of studies that you can participate in. Also over the next five years, eczema research will be much more advanced.

11:30am – Patrick Brunner MD
Ok, please forgive me as you can now see why I was never a straight A student. I forgot to take notes on this speech :/ sadly. Something about foreign accents, they get me every time! I do know that he went over alternative and current treatments. (will try and fill this in, after asking someone).

1:00pm MD Peter Lio

Dr. Lio from Chicago (who claims their pizza is the best – although we know that’s not true), was the most forthright one on the panelist. His sincerity was really captivating.

We don’t have the root of the disease ~ Dr. Lio

He expressed the importance of mental health and having a mind body connection. He’s advocates interactive dermatology. As a doctor he knows that the amount of suffering is the highest with atopic dermatitis. He went over the benefits of sunflower oil and how it protects and acts as a barrier repair and is anti-inflammatory. More importantly, he said sunflower oil may save babies lives if born premature. On the flip side, olive oil can cause damage to the skin. He mentioned that there is a correlation between your eczema and a having a leaky gut. Gut health is very important. Questions, how do we get the gut to not leak or become less leaky.
*Highlights – He has a child with severe allergies and mentioned his mother is petrified to be alone with just his kid, for the fear of something triggering said allergies! His positive opinion of Dr. Aron method – and how he’s had patients have success with it.

1:30pm – Jennifer Moyer Darr

Dr. Darr has a wide range in ages when she treats patiences, but it always hits home when she’s deals with kids. She mentions that atopic dermatitis has one of the biggest impacts on the quality of a child’s life (Yup, I can definitely attest to it). Dr. Darr did a great job of remember patients who were at their wits end. One eczema patient, who was a child told her “Every night I pray my eczema will be gone.”

Whether my patient is 6, 16 or 60 people still comment on their skin and/or are bullied ~ Dr. Darr

She also talked about sleep or lack there of and body temperature regulation. How those with eczema may kick off the covers from their skin becoming too hot.
*Highlight – the smaller group session, she ask “Name something positive about having eczema.” The responses were great and ranged from tears to laughter.

2:15pm – Small Groups
Around this time we broke up into three groups. Dr. Lio, Dr. Darr and Julie Block each took a room. As we rotated rooms, we were able to share stories, trials and tribulations and what has actually worked. Ideas were thrown around, such as acupuncture being super beneficial to eczema and how to get better sleep with itchy skin.

4:10 Closing Remarks
Julie Block reminded us to stay positive and hopeful for the future!

Some Questions Highlighted at the Event:
How do we differentiate the two words eczema and atopic dermatitis? Should we differentiate them?
Why are Doctors/Dermatologist so dismissive?
How do deal with a school giving you a hard time about your child/children missing classes because of their flare-ups?
Why is it so hard to get approval from certain insurance companies for trial drugs?
Do typical steroids really work? Or are pharmaceutical looking to make a quick buck?
Can alternative medicines such as apple cider vinegar and turmeric cure eczema?
Are scientist looking into medical marijuana to help alleviate pain and symptoms?
Why is eczema differ so much from person to person?
Why hasn’t there been a solution early prevention?
Does eating healthy help when it comes to eczema?
Why do those that have leaky guts, have more severe eczema?

Overall the event was such a success and I hope that more of you GET INVOLVED. The more the word is spread, the higher the likelihood there is to finding a cure!!

Huge Thank You To The National Eczema Association For Inviting Me!

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