SamanthaSarube
We want to get to know you and learn more about each other's lives and journeys with atopic dermatitis.
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Introduce yourself! What is your name? Age? How long have you been living with atopic dermatitis?
ConfidentialMember
48 years old (warning impending verbal diarrhea)had it since born, worse case in town said 1 of four dermatologists ,of mostly hand exema eczema/contact dermatitis. Only started at my hands at significant levels pre puberty as a child was the typical like a diaper rash (raised on cloth diapers) and only on limbs barely torso. I can't wash hair with out gloves or do wet work (dishes hand laundry two hours of waking and after 4pm even in gloves in hot humid conditions use cotton gloves leading to more hand sweat triggered . Food prep is a struggle since week day energy prices unavailable at lower fees and food prep doesn't last for day 4 and 5 in refrigerator(freezer food lose nutrition)I wash hair in chemical resistant (less snaggy then latex and nitrile etc. )gloves for fear of contact dermatitis allergies to lanolin and certain hair products. Even have gone to salon just for help just washing hair in the summer. Tried dermasmooth in winter but not on bubbled areas since thins out and ooze leaving open non existent barrier of skin(lemon juice on hands excrucitating)(feels like battery acid contact using hot water during flare ups) I miss swimming I did as a child. I've tried oatmeal baths and salt baths and glycerin soaps shea butter most of the over the counter products at the four chain pharmacy retailers the products made at outdoor venues emu oils...they used to have spray body vaseline co.body lotion but no longer in production(concerning). Noting coconut oil that has gone old triggers skin rashes, but new coconut powder in hot chocolates or shredded coconut no problem, now another food allergy seafood allergy omega 3 levels most likely very low ( non traditional medical fields bring this up ) . Bring this up since zebra mussels etc. seemed to be introduced to water ways and I'm pretty sure the water filtration plant doesn't test for such As an aside, bring this up because 90 percent cured status of hands in winter versus summer where the prevalence of the mussels are significant just a unconfirmed thought but many people have no food allergy and issues with skin in non sea shell based water areas. On the topic of environmental triggers peer across street in a industrial border town(air pollution of stack article debates in the area) and sister said both were caucasian and living with exema disturbed in sleep bloodies pillows and moved to prairie provinces and they have 90 percent were cleared from exema. 0 need for medication 10 percent exercise triggered asthma and 10 percent environmental rest not existent don't see much of a correlation to environmental stress triggers. Possible chrome allergy which is seen in taps- no longer tested or come out reversed in my allergy clinic was passed on by local allergists to specialist for allergies and avoidance seems to be only recommendation if don't want immunosupressant drugs, Except for s well as NO ACRYLIC GLOVES coat liners for winter wear or sweaters or wool.... had great success on allergy shots for grass and ragweed but exema still there. Tried fresh diet exclusion diets no sugar diets written up by allergy doctors and naturopaths. Had some relief Bernstein diet because was using meal replacement no sugar protein drinks and they replaced food prep? or low dairy but whilst there need to make sure didn't take calcium supplements from seashell coral source (seafood allergy). Apparently fathers side of family had it but its barely triggered may get one inch dry scaly rash per year, they can do laundry dishes ungloved but have no fish allergies. Don't use water based lotions or oil ones on hands balms or sticks help after a water filled bump bursts and goes scaley or cracked skin scale mode always great for social stigma ew when feel like super hero the Thing-made of rock hardened joints of fingers. Speaking of stigma shout out to ABC late night tv hosts making fun of the condition. When breaking out swelling doesn't help to type or play piano or avoid zipper tears paper cuts on least sharp items. Always walking with liquid skin to paint up bloodied cracked skin on hands. I've tried urea corticosteroids tar some oral tablet/capsule can't remember ..that tmi- I upchucked on day 3. Surgical doctors from another country said to stop the steroidal ointments. I beleive I can't hold a soup bowl hot beverage like my peers due to decades of steroid creams thinning skin side effect like I did as a child. Find opposite of keeping moist as older doctors said which seems back wards of avoiding wet work helps. I tan affected area with sunblock and use hair driers post washing(papertowels cut skin up when in the folded form from schools and some toilet papers) and it's helped 70 percent for preventing swelling and speedier recovery but doctor has denied it. I avoid outdoor sun as a pale person not as burnable as a red head or freckled one. I am in Canada where country doesn't offer free biologic unless 70 percent of body covered. I've tried teas from European Countries prescriptions via monks despite being a scientific minded person. Unsure if want to claim disability with what burden of proof since most work is wet work or lifting or typing which is conflicting with the healing mode and previously not an option and change in regulations of being able to work with food if cover oozing shedding zones ? Offered experimental trials since 1990 but don't like the disclaimer may get TB when worked in non isolated settings (on the rise with more unhoused levels).90 second per patient doctor average was heard of fifteen years ago, and statistic of doctors not actually listening and having no bed side manners pushing drugs against religion issues to do trials. One year waits and new reapplying to allergy and dermatologists and general lack of doctors seems a universal story.
SamanthaSarubeCommunity Admin
CommunityMemberd1199dMember
Hi I'm Tami. I'm 44, and I've been SO blessed with a multitude of autoimmune disorders, (asthma, food & environmental allergies, narcolepsy, POTS-possibly, and of course, eczema). I've never had clear skin (at least not without steroids in one form or another). Some of my earliest memories include soaking my feet to get my socks unstuck from the multitude of scabs, walking on my toes with knees bent to avoid stretching my skin and cracking it open again, never wearing short sleeves because I was too ashamed and embarrassed for anyone to see the crusted skin, blood, and ooze everywhere. Heaven forbid if I ever wore something light colored, it'd be blood stained before the end of the school day. My bedsheets looked like a murder scene some mornings, and the skin flakes!!!
While the cracking and oozing is thankfully not so severe anymore, I'm still a flaky girl lol.
CommunityMemberb5adddMember
My name is Deanna Rose, I have been living with eczema since the day after I got my RSV shot (2 years ago). Didn't know for some months, that is was eczema.
Since then I have learned to manage it (somewhat) with diet and an effective cream/salve... but it never completely goes away.
RutaBMember
Hi,
My my name is Ruta, I live in San Diego CA and my eczema started after I had to have an Adrenalectomy. It was a big surprise and no idea what to do. I am grateful this site is available for me as a resource and kinda support group. Thank you.
SamanthaSarubeCommunity Admin
