May 16, 2017

Eczema


Here’s a free collection of resources about eczema- Eczema blogs, videos, support groups, first-hand experiences and advice from people who have Eczema, etc.

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Eczema Blogs

Here’s a list of eczema blogs- blogs written by people with eczema, or about eczema.

****Email alexbalinski@gmail.com to submit your blog to this list.***

Prime Physique Nutrition primephysiquenutrition.com 2017
Gilly’s Eczema Skim Balm eczemabalm.com 2017
Itchy Little World itchylittleworld.com 2017
Everything for Eczema everythingforeczema.com 2017
Diary of an Eczema Sufferer skinurghs.blogspot.com 2017
Eczema Blog what-is-eczema.com 2017
Battle Eczema battleeczema.com 2017
Eczema Blues eczemablues.com 2017
Eczemacism eczemacism.wordpress.com 2017
I Have Eczema i-have-eczema.blogspot.com 2017
Beyond the Itch beyondtheitch.wordpress.com 2017
Ditch the Itch ditchtheitch.blogspot.com 2017

 

Eczema Support Groups

Eczema Support Groups On Facebook

  1. Dr. Aron Eczema Treatment Discussion Group (22426 members)
  2. Healing Tribe: Resolving Allergies, Eczema and More (10902 members)
  3. Eczema Parents (9752 members)
  4. Eczema Support Group (8148 members)
  5. Eczema & Allergies Champions Support Group (6584 members)
  6. Skin Disease Support (5255 members)
  7. Dermatologist Acne/Rosacea/Psoraisis/Eczema Treatments
  8. Eczema UK (4930 members)
  9. Kids with Allergies, Eczema and Asthma (3913 members)
  10. Parents of Children Suffering with Eczema (3862 members)
  11. Baby Eczema Support Group (2555 members)
  12. Eczema, Contact Dermatitis and Patch Testing Alliance (2062 members)
  13. Dyshidrotic Eczema (1906 members)
  14. Parents of Children with out of Control Eczema Support Group (1745 members)
  15. Eczema Diet Support (1616 members)
  16. Atopic Dermatitis/Eczema (1506 members)
  17. Children Living with Eczema, Urtacaria, Asthma, and Allergies (1288 members)
  18. Gateway Food Allergy, Eczema, and Asthma Support Team (1217 members)
  19. Global Parents for Eczema Research (981 members)
  20. Eczema Babies – Support for Parents (926 members)
  21. Eczema Support Group New Zealand (921 members)
  22. UK Eczema Support (884 members)
  23. I Suffer from Pompholyx Eczema Group (724 members)
  24. Eczema Caused by Nickel Allergy (485 members)
  25. Eczema Outreach Scotland Support for Parents (374 members)
  26. Eczema Support Group – Prime Physique Nutrition (351 members)
  27. Natural Eczema Support Group – NZ Australia (337 members)
  28. Eczema Support for Parents UK (220 members)
  29. Eczema Philippines (174 members)
  30. Eczema Group (15o members)

Other Eczema Support Groups And Forums

  1. Daily Strength Eczema Support Group (306 members, 990 posts)

 

Eczema Survey

We’re surveying people about their experiences with eczema. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)


**Click here to share your experience with eczema**


Eczema Symptoms

What symptoms have you experienced?

  • Itchy eczema all over body – especially on cheeks, diaper area, behind knees and in elbow fold. Also on limbs and even on scalp as a very young baby (had eczema since three months). (Zoe, 19 months old)
  • All over redness, bone deep itch, whole body flaking, dryness, adrenal suppression, “pins and needles”, growth delay, excessive skin shedding, warts, broken skin, body temperature hot/cold, oozing, lack of sweat, excessive ear wax. (EB, 11 years old)
  • I have itchy skin, feel really itchy at night, my skin turns red and flares up. (Joshua L., 16 years old)
  • Itching, bleeding. (Jaclyn, 19 years old)
  • Itching, bleeding and most of all irritating. (Liam, 20 years old)
  • Itchiness, rashes, dryness, flakiness, bumps, bleeding, peeling or redness. (Kierra, 20 years old)
  • Typical eczema rash, insomnia due to itch, anxiety and depression exacerbated by appearance. (Miranda, 22 years old)
  • Full body eczema since 14 years old. (Aaron, 24 years old)
  • Red skin syndrome, weeping, extreme flakiness on face and back, sensitivity to facial products and environment. (Lorin, 33 years old)
  • Itching, bleeding, pain. (Rachel M., 38 years old)
  • Intense itching, dry peeling skin, eczema herpeticum, staph infections, allergies, tiredness, low morale. (Nigel L., 51 years old)

Eczema Facts

What are some interesting facts you’ve learned about eczema?

  • It’s an autoimmune disorder and often related to food allergies and contact allergies. Skin has a poor barrier function and lacks fillagrin, and t-cells overreact to irritants. (Zoe, 19 months old)
  • Not to use steroids. (EB, 11 years old)
  • Do a proper diet, don’t eat so much junk food, or you’re eczema will be triggered. (Liam, 20 years old)
  • Anything I try (creams, oils, etc.) are only effective for about six months. (Kierra, 20 years old)
  • We may have “leaky gut”, it’s an autoimmune disease. (Miranda, 22 years old)
  • That there are many unsuspecting reasons as a cause. (Lorin, 33 years old)
  • That mine is triggered by my immune system. (Rachel M., 38 years old)

Eczema Itch Relief

What are effective ways to relieve your itches?

  • Baking soda, sit in a bath for a few minutes. Rinse off and then a second bath with diluted apple cider vinegar. Blackseed oil (taken internally) and on itchy spots to reduce inflammation. La Roche Posay Lipikar Ap+ lotion. Diluted apple cider vinegar throughout the day on itchy spots. Scratch sleeves clothing to prevent making things worse. (Zoe, 19 months old)
  • Cold, ice packs. (EB, 11 years old)
  • Sometimes I try to wrap my itchy skin with saran wrap, take a lotion, avoiding eating dairy products, chicken, eggs, etc. (Joshua L., 16 years old)
  • Wrapping affected area with gauze. (Jaclyn, 19 years old)
  • I have numular eczema, and I use petroleum jelly with some steroid creams. (Liam, 20 years old)
  • Cream, or cool my body temp. (Kierra, 20 years old)
  • Moisturizer/oatmeal bath provides temporary relief. (Miranda, 22 years old)
  • Topical and oral steroids. (Aaron, 24 years old)
  • Epsom salt baths, keeping cool, drying brushing away dead skin and moisturizing with a good balm. (Lorin, 33 years old)
  • Bath. (Rachel M., 38 years old)
  • Hot water, scratching, creams, antihistamine, emollients, alcohol, cold air from air conditioner in car. (Nigel L., 51 years old)

Eczema Difficulties

What are the hardest aspects of living with eczema?

  • Being itchy all the time. Having to avoid common food like wheat, dairy, eggs and nuts! (Zoe, 19 months old)
  • Eczema was manageable, but topical steroid withdrawal was hell. (EB, 11 years old)
  • I can’t live my life like I used to before having eczema, like wearing shorts, a t-shirt, and because of that I have to wear a jacket every day. I have to avoid dairy products and chicken, which are my favorite food. Sometimes people in my school don’t know my condition, and make fun of me. (Joshua L., 16 years old)
  • Cosmetic issues, discomfort. (Jaclyn, 19 years old)
  • Even when you sleep it’s really itchy, and when you wake up in the morning, they bleed. (Liam, 20 years old)
  • The pain and irritation. (Kierra, 20 years old)
  • Every aspect of life is impacted, and made more difficult. (Miranda, 22 years old)
  • Constant pain and itch. (Aaron, 24 years old)
  • Doing normal activities, just waking up, and ‘getting ready’ is an ordeal. Having people understand how much pain you’re suffering. (Lori, 33 years old)
  • How it looks. The pain and itch. (Rachel M., 38 years old)
  • Itching, sore raw skin, rashes, itching, and ITCHING. (Nigel L., 51 years old)

Eczema Advice

What words of encouragement/advice can you share with others who have eczema?

  • Treat the staph. Heal the gut. Don’t eat too much chocolate, dairy or nuts! (Zoe, 19 months old)
  • Do not use topical steroids. I wish I never put them on my son. (EB, 11 years old)
  • If someone bullies you because of your skin, don’t let it affect your life in a negative way, take it to be a motivation for you, that I have to stay healthy, so I can have a flawless skin again, so no one can make fun of me again. (Joshua L., 16 years old)
  • Don’t lose hope, God will find way to cure us. (Liam, 20 years old)
  • Find what works for you. (Kierra, 20 years old)
  • You are not alone. There are plenty of people out there willing to help, and share their regimen. (Miranda, 22 years old)
  • There will be a day when you will feel normal. This pain will one day pass. (Lorin, 33 years old)
  • You’re not alone. (Rachel M., 38 years old)
  • Keep fighting, and you can cope. (Nigel L., 51 years old)

Eczema Diet and Exercise

What’s been your experience with diet and exercise?

  • The baby runs around a lot, so she gets plenty of exercise. And mommy puts her on a special eczema diet. It helps to avoid her food allergies (nuts, eggs, dairy), but no significant difference is seen when avoiding things that are recommended to avoid. (Zoe, 19 months old)
  • He did not change diet. He could not exercise. (EB, 11 years old)
  • I started a diet without dairy products, chicken and eggs for about one month now. The first time it’s so hard to do it, because they’re my favorite foods. (Joshua L., 16 years old)
  • It’s good, but it’s hard. You can’t eat the food you really want to, or else you’re eczema will be triggered. (Liam, 20 years old)
  • Non-effective. (Kierra, 20 years old)
  • I’m now on GAPS diet My skin was best with veganism and frequent exercise. (Miranda, 22 years old)
  • It stopped me from exercising, and restricted my diet. (Aaron, 24 years old)
  • No exercise. Not a priority, and I would feel it would make me feel worse (getting hot and sweaty). Diet is frustrating when you read all the lists of foods to avoid, and you get your best to eat cleaner, and skin is not improving. (Lorin, 33 years old)
  • No matter how I’ve ate, my skin stays the same. (Rachel M., 38 years old)
  • Leave out sugar, use skimmed milk, exercise. Playing football helps. but affects breathing. (Nigel L., 51 years old)

Eczema Treatments

What’s been your experience with treatments (lotions, etc.)?

  • We rotate through various ones so that we can see which ones help. Cerave baby lotion is nice, aquaphor ointment, and la roche posay lipikar ap +. Blackseed (cumin) oil helps to reduce inflammation. Not currently using steroids or tracolimus – eczema is under enough control with just the moisturizers and special baths. HUGE difference with probiotic supplementation (lactobacillus rhamnosus GG)- we just switched over to Phage Complete (Gut Health protocol) which has l. rhamnosus in it. Also a huge improvement when we switched to cod liver oil (Carlson’s brand) instead of fish oil. Cod liver oil has vitamins A and D, and they really help the skin. Also take a half teaspoon of Blackseed oil each day. Also take a multivitamin which doesn’t contain synthetic folic acid but folate instead. (Zoe, 19 months old)
  • Tried everything from lotions to steroids under occlusive wrappings…found out he had Red Skin Syndrome/Topical Steroid addiction. (EB, 11 years old)
  • I think for me lotions or anything from outside didn’t really do much for me, because it always comes back and comes back, but inside (what you eat) decides what’s going on with your eczema. (Sorry for my really bad English). (Joshua L., 16 years old)
  • Itchy at first application, but after a few hours it’s gone . (Liam, 20 years old)
  • Partially effective. (Kierra, 20 years old)
  • Spent thousands on over the counter medicines that haven’t helped. Prescriptions- more of the same. (Miranda, 22 years old)
  • Topical and oral steroids. Injections. Cerave cetaphil, shea butter, apple cider vinegar. Antibiotics. Tsw. (Aaron, 24 years old)
  • Minimize products. I still don’t ‘wash’ my face with water. I clean my face with alcohol-free witch hazel, then apply a good balm and shea butter. I put zinc on weeping areas. (Lorin, 33 years old)
  • Tried every cream and ointment available. Tried light treatment. Wet wraps about hospitalization. None have been successful. (Rachel M., 38 years old)
  • Use Elacon cream, Aveno Shea butter, emulsifying ointment, Oilatum plus, cetirizine. (Nigel L., 51 years old)

Eczema Recommendations

Anything you’d recommend for someone with eczema?

  • Get food and environmental allergy testing!!! Fix leaky gut. Probiotics (histamine degrading like Phage Complete), cod liver oil, quercetin, l-glutamine. Get patch tested for chemical allergies (truetest.com). (Zoe, 19 months old)
  • Use all natural things. Avoid immunizations/spread them out if you must. No steroids. (EB, 11 years old)
  • Take apple vinegar- for me it’s working so well. (Joshua L., 16 years old)
  • Don’t eat eggs, chicken or junk food, and eat more fruits . (Liam, 20 years old)
  • Eucerin healing creme, regular bleach/acv/Dead Sea salt/oatmeal baths. (Miranda, 22 years old)
  • Find out your triggers (food/environment). Don’t listen to traditional MDs pushing steroids. Use cleaner health, body, cleaning products. Have a good support system who understands when you can’t get out of bed, and do normal activities. (Lorin, 33 years old)
  • If it’s severe try an immunosuppressant. (Rachel M., 38 years old)
  • Talk about it. (Nigel L., 51 years old)

Eczema Resources

What specific resources have you found most helpful?

  • Eczema is triggered by staph bacteria, and heat and sweat make it worse. Eczema people have a skin dysbosis and too much bad bacteria on the skin. Learning how staph works and how to kill them. How biofilms work (they protect the bacteria and are why your eczema comes back when you stop the steroid too soon). Learning about leaky gut, and how to fix it. It’s so important. Avoiding potential sensitizers and common contact dermatitis ingredients (nickel, neomycin, methylisothiazolinone, formaldahyde, etc.). (Zoe, 19 months old)
  • ITSAN.org, educating myself on the effects of TS & vaccinations. (EB, 11 years old)
  • Staying away from dairy products, and trying to take a spoon of apple vinegar every morning are the most helpful things for my eczema. (Joshua L., 16 years old)
  • Natural/organic creams. (Kierra, 20 years old)
  • Eczema support groups. (Miranda, 22 years old)
  • Abby Tai’s website. (Lorin, 33 years old)
  • Eczema Society. (Rachel M., 38 years old)
  • National Eczema Society. (Nigel L., 51 years old)

Eczema Stories

Share an experience you’ve had related to living with eczema.

  • The worse…watching my son suffer through TSW. The best thing…figuring out what made it worse, TS. (EB, 11 years old)
  • So irritating, they healed, and after a week or month, they came back, I hoped they were gone forever. (Liam, 20 years old)
  • Being stared at. (Miranda 22, years old)
  • You feel so ugly and not yourself. You lower your standards of normal appearance. Simple things- showering and going to work, doing chores- takes so much effort. (Lorin, 33 years old)
  • I’ve had relationships break down, and I’ve suffered prejudice. (Rachel M., 38 years old)
  • Tired most of the time mentally (combined with job). I look OK at the moment, though red complexion with wrinkled hands. I can cover it up, but people don’t realize the constant itching is sometimes almost unbearable. The best release is hot water, and then cooling air. Holidays in hot dry countries and use of the sea does wonders. (Nigel L., 51 years old)