Living with Atopic Dermatitis - Eczema
Jun 15 '04
The Bottom Line Atopic Dermatitis (AD) is a disease that causes itchy, inflamed skin. Some skin will blister, weep or peel. AD sufferers always have very dry, brittle skin.
I have been plagued with eczema and asthma my entire life. Atopic Dermatitis, hereonin referred to as AD, asthma and hay fever are known as the "Atopic Triad". AD is not just a childhood disease, for most people it is lifelong. AD is not contagious, but people will gawk at our rashes as if it will attack them.
AD is hereditary and seemed to skip a generation in my family. My maternal grandmother had eczema, but not to the same degree as mine. I was able to commiserate with her during warmer months growing up in New Jersey since we both had that spot on our face between the nose and mouth. I would rub that skin raw and then have to walk around with a white cream on the area and endure stares.
During the winter months the hands were rough and cracked with bleeding occurring often. There are times my hands are so sore they look like that of a mechanic. I always liked the look of nail polish, but the stinging and burning to my skin from the remover was not worth the hassle. Just the other day I saw a commercial for a new product where you can insert your finger and twist or turn to remove the polish. It would be nice if I could try that new system out, but I can just imagine the shape my finger would be in upon removing it. I do get by with dipping a Q-tip inside the unscented nail polish remover. There is only one type of remover I can use since most of the brands and varieties contain lanolin, the ingredient I avoid like the plague.
Opening containers and jars is like living with arthritis, an impossible task to overcome, especially with tamper proof and child-resistant containers.
Shaving legs is not an easy task due to the marks and rashes on the legs and the razor causing more damage. I would really like to try a self-tanner product and see if it would cover over my rashes, but they contain lanolin as well, so another dead end in trying to cover up the eczema.
Back in the 1970s when I was in the eighth grade my hair had to be parted on the side due to a bald spot from picking my hair. This is known as seborrheic dermatitis. There are special shampoos to use to combat this condition, but I found an Rx that works best, Fluocinolone Acetonide Topical Solution. This does not burn when squirted over the scalp and is in a clear liquid form.
For stopping the itch while sleeping the two pills I have used over the years is Atarax and Benadryl, both are Rx. Cotton gloves work well, make sure they are not scented, too tight or loose. There are also therapy gloves and foot socks for wearing on your feet while cream, lotion or ointment is on.
For me I prefer the sooting relief found in creams and tend to use them on my face and legs, while ointment works best on hands with gloves on. A tip I learned long ago is to keep the creams in the refrigerator during the summer months. There are about ten tubes of creams in my refrigerator at this moment and I squeeze every last bit out.
I lucked out when I tried the Cortaid Spray and have continued using it with good results. This works well for the back, legs and arms with no contact needed. Keeping nails cut short and clean is a good step to stop the scratching. I must say though that there are times that the itching feels almost as good as having an orgasm, and it is hard to stop once you start. When I am at that level I continue the scratch and then head to the sink with my hands under the cold water to stop the scratching.
I found another remedy quite by accident. Both my children are on the autism spectrum and so far have had little bouts with eczema. I sprinkle Epson Salt in the bathtub and then swish it around with my hands. They feel so soft and silky when I remove them that I do not need any hand lotion.
Being in the bathroom when my children are in the bathtub is brutal on my skin. I can feel my face becoming inflamed and have to sit there with the window open and Ponds Dry Skin Cream smoothed all over my face, repeated before I get the child out of the tub. I also keep the Ponds Cream in the shower and lather up before I even get in. The water is usually on cold and I lightly towel dry. A few times in the winter I go over board and use hot water and have the heater on in the bathroom. Then I rub my body with the towel and my face ends up looking like I have sunburn.
Cooking in the kitchen is not a pleasant task. I could not stand anywhere near the toaster oven when it is on and then using the George Foreman Grill makes my face sweat. I have to endure these brief times since I cannot leave the room with my son close by and potential danger with him near these products.
I have ceiling fans going all day and night in my kitchen and bedroom. A few weeks ago I purchased an Air Conditioner for my bedroom and already noticed a big difference in my skin and comfort level. I keep it on all night freezing cold and sleep in summer clothing, yet I changed from a light comforter to the winter one.
Driving in a vehicle requires air directly on my face for relief, no matter what time of the year it is. I have the vent on in the minivan all the time now plus the windows open.
Many years ago I had to change professions since working in a restaurant required touching food and the salad bar. The acid in the foods burned my skin on contact and touching all sorts of condiments caused irritation. Wearing gloves was out of the question since my skin needed to breathe.
Long ago I worked nights at a grocery store at the register. Then I had to wear bandaids on all my fingers before moving on to wearing cotton gloves on my hands. Having to touch all the detergents and food items with acid and drippings caused my skin to crack and peel.
Those who suffer with AD will have to consider professions while in school and adapt to what their skin signals. I noticed a few weeks ago while in Ralph's the employee scanning my items was putting on a bandaid and he also suffers with AD. You need to change professions because your skin will not change and will only get worse.
Depending on what type of Doctor office you visit for your appointments you may have to physically take your lab tests to the lab. One time the nurse handed me the plastic bag with the vials for the lab and by the time I handed it to the person my hands were so itchy they became raw. Now I ask the nurse to place the bag in a paper bag before I will touch it.
These are just some of the issues involved for those of us who live day in and day out with AD. I wrote four years ago an essay under What Is Sensitive Skin - http://www.epinions.com/beat-review-5025-526A49C-39E65878-prod2. All the tips mentioned back then are still relevant today and should be useful for others.
The reason for writing this essay now is due to support systems I would like to share. Having been taunted by others growing up and then a parent who was embarrassed by it and not supportive I want to make sure no other person with AD goes through that humiliation.
I have belonged to an eczema mailing list/group that has members from all over the world sharing what works and tips for themselves and their children - www.eczema.ndo.co.uk/
There is an organization - National Eczema Association - www.nationaleczema.org - they publish a quarterly newsletter The Advocate. I emailed them for some back issues and have read all five of them. They are having the first ever National Eczema Association Patient Conference this July in Washington, DC.
There are also Telephone support contacts for various states. You can host a support group or become a support contact by contacting NEASE for an application. The Advocate has pages of letters sent in and this section is aptly entitled The Scratch Pad. I felt such relief just reading the many letters of adults who have suffered with AD and learned from their trials and tribulations as well as tips to try.
One of the issues mentioned lanolin and how it is an ingredient in many moisturizing creams and lotions, as well as in hydrocortisone preparations. It is suggested that those with AD be tested for an allergy to lanolin. That article made all the difference to me since I also have that allergy.
I learned that children with AD should not get the Chicken Pox Vaccine. A listing of jobs with a high risk of irritant dermatitis - housework, catering, cleaning, nursing, hairdressing, gardening, farming and engineering. I am allergic to grass and just standing in shorts in my front yard to water my lawn causing an outbreak and itching.
There is CAMP DISCOVERY - free for children to receive transportation scholarships and tuition scholarships. Applications are due in April, www.aad.org or call AAD at (847)330-0230. This camp is a week's worth of fishing, boating, swimming, water skiing, arts and crafts for children with AD. Ages 10-13 go to Minnesota in July, ages 8 - 13 for August in PA.
For those with AD between the ages of 18 - 65 you can take part in studies with compensation for time and travel, exams, etc. This is in Lakewood, WA at www.radiantresearch.com or cal 253-581-3627
NEASE - National Eczema Association for Science and Education. A free book for children is available thru NEASE. Under my skin - A Kid's Guide to Atopic Dermatitis with an accompanying brochure for parents. NEASE is located at - (415) 499-3474, 4460 Rdwood Highway, Suite 16D, San Rafael, CA 94903.
The Advocate issues also offer examples of how to contact Legislatures and encourage them to fund research for a cure of AD. 30 million people are affected, 10 percent of Americans. I hope someday to find a Dermatologist that has AD as well and understands it is more than just a rash that itches. Stress management alone is not the answer, diet changes, living arrangements need to be adapted, change in weather affects AD as due climates. Exercise in loose clothing and avoid sweating, cold compresses soothe the rash. Clothing manufacturer's need to change the hooks on both the front and back closures for bras. These are irritating to the skin and cause breakouts on front and back, wherever the hook is located. I like how t-shirts and underwear are now tagless. We need to follow suit and remove the annoying hooks on the bras and use another method that causes less friction to the skin. At least Frederick's of Hollywood still sells pasties and pedals for coverage.
Last week I received a miracle cream I purchased from a Canadian seller on ebay. The other day I received a question from another member asking me if the cream worked. It turned out this person was looking for something for their child and thanked me for all the data I shared. This cream is working on the spots on my left arm. It is available at www. naturalconcepts.ca. This is a natural product.
For parents of children with AD under the age of thirteen there is a study at Wake Forest University School of Medicine in NC. (336) 713-5278. Study is BG 02-294 and the child should have AD for at least three months. This study pays $10 and has surveys you fill out and then a follow-up on how AD impacts the family via phone call.
AD affects self esteem in children and forces adults to live in seclusion. The next step is to help promote awareness and share support with others so we can go about living daily lives with minimum embarrassment and no longer suffer in silence.
I have written many reviews on products to help the itch and rashes. It is a trial and error at this point and I might consider alternative medicine next like hypnosis and acupuncture. The public at large need to take AD/Eczema serious.
UPDATE ***
I had meant to include a note about Prednisone. I have had to beg the Dermatologist for this Rx and then sometimes regretted that. You can take Prednisone for a few days treatment or a few weeks. They taper it down so you take only a few every day until just one. Please beware this is the NASTY pill. For those that suffer from PMS this will be ten times worse. I did take Prednisone to prepare for a court case I was battling with my ex and I planned far in advance so that the nastiness was gone by that time, but the face cleared up.
Also about Elidel, this is a very expensive cream, about $150 per tube and I received an RX for this first for one tube every ten days. Then I spoke with the Dermatologist and had it changed to every five days. Blue Cross did cover it, but regular CA Medi-Cal for my son did not. Since my Dermatologist left and another one is there I have to go for an appointment before obtaining another Prescription for Elidel. More information on this cream can be found at www.elidel.com. I subscribe to their email newsletters which offer some advice and tips - more so than the Dermatologist does. For some reason they think lathering on the ointment is enough.
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