Eczema Patients and Caregivers In their Own Words

NEA posed the question,

“What Should every Eczema Patient Know?”,

on the NEA facebook page recently,

and here’s what people had to say:

 

AG Eczema patients should know side effects of all treatments and what factors can trigger eczema flare-ups (stress, diet, etc).

JB That steroid creams aren't always the solution.

KS You are not alone.

CZ It’s hard but there is always hope and keep trying.

SK That open skin breaks the barrier between you and the rest of the world. Other skin infections and viruses can be more frustrating and damaging than eczema if they break into your body.

AM That it is hereditary. Your children are likely to have it as well. It seems to me that a lot of people with eczema say eliminating cow milk in some way helps.

KC This is not your fault.

NK Get stubborn eczema cultured for infection. Get tested for allergies annually (for kids).

DC Education is the key.

MA I think each person should know that different treatments work for different people and that no matter what treatment you choose, someone will always have something judgmental to say about it. We each have to use what works the best for us and we should have compassion and respect each other's choices.

NB That there is no cure... but you can keep it at bay. Moisturize often, know your triggers, and if you have to, use steroid cream. It's easy for some to say "avoid steroids," but sometimes, you have to do what you've got to do, just to help your child (or self) to go over the hump.

BD Moisturize, moisturize, moisturize

DT Soak and seal!!!!

SW Every eczema patient should know: Patience. It takes time to figure out the best way to manage your individual condition. It took me and my doctor 6 months to just get on the right road. Even dermatologists don't have all of the answers so it requires patience, awareness and open communication.

KT That eczema does not define who you are. You have eczema, eczema does not have you.

WA For children with eczema, it's important that they know it's not their fault. They are loved just as much as anyone else and they are just as normal as anyone else. It's not a burden on their parents, it's not "nasty," and nothing to be ashamed of. Just remember, "Those who mind, don't matter and those who matter, don't mind."

MR I want everyone to know that if you go to Docs who throw Prednisone at you because they don’t know what to do, that there ARE DOCS THAT KNOW HOW TO HELP! You just have to seek them out. For me it took 4 years, hundreds and hundreds of dollars, 50 lbs of weight gain, countless other side effects from the steroids and MISERY! It took ONE appt to get some relief from a Doc who KNEW what she was talking about.

CP Taking evening primrose oil or borage oil capsules twice a day is a great help to me.

JF Moisture is most important.

SD That distraction is a big help when all they want to do is itch :(

MC I would have to say that for parents of children it is important to find a balance and not let it consume you. It's hard to not let anxiety take hold. There is no cure, just maintenance and hope for the future.

TC What works for one person, may not work for another. It's up to trial and error to determine the best treatment and what the actual triggers are.

CR It is not hopeless...it just takes effort...and lots and lots of moisturizers...we have also found that bleach baths work to help keep bacteria/staph reduced to avoid infection ... Good luck to all that suffer from this frustrating, but not hopeless condition.

Join the conversation with people who understand:

NEA on facebook: facebook.nationaleczema.org
NEA’s online support community (private and confidential): community.nationaleczema.org