National Eczema Society and other Support Groups

Eczema Voice: People and Support Groups: National Eczema Society and other Support Groups


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Top of pagePrevious messageNext messageBottom of pageLink to this message   By georgiamw on Wednesday, August 22, 2012 - 11:54 am:

Hi,
I've had ezcema on and off since I was 12 (now 28). My big advice... AVOID STEROID CREAMS AT ALL COSTS!! My mum has ezcema on the back of her neck as well. She used steroid creams and as a result got cataracts in her eyes as the cream was too close (back of neck). This is how potent even the mild prescription creams are. Even when the result is not as dramatic as that, steroid creams think the skin leaving it vulnerable to breakage and unable to function correctly.

I have to say that my ezcema is slightly different to most people's. Instead of the dry, red itchy rash that most describe, mine is called Pompholoxic Ezcema and displays as fluid filled tiny bumps all over my hands and feet (where several join, it can often look like one big fluid filled bump). They don't look like zits or pimples, the fluid inside is clear, like water. The only way to relieve the itching is to burst them, but they are so numerous this is almost impossible, they appear in different places one day to the next (yesterday both my forefingers had patches and between my toes, today it is the ball of my foot and my little fingers) and breaking the skin makes it sore and awful. It generally appears in the summer and during the winter I am ezcema free (like hayfever does!).

In the last 5 years I have not suffered. I originally believed this to be because I lost about 10 stone (140lbs to those in the US) and have kept it off. I figured that because my ezcema was related to heat that it had something to do with my dramatic reduction in bodily insulation, thus keeping my core temp down. Or so I thought. This summer (this week actually) I've had the worst flare up since losing the weight.

I wanted to share with you how I coped with/kept my ezcema at bay when I was big. I found taking 2 1000mg capsules of star flower oil per day (the bottle says 3 a day, 1 with every meal, but I took 2 in the morning for ease) kept it at bay. Within a few days of taking it, the ezcema was gone and you couldn't tell where it had been. I didn't need to wait a month or a few weeks, a few days and bang it was gone. Combined with just switching from cow's milk to soya milk and soya marjarine instead of cow's milk marj and cutting back on the amount of cow's milk cheese I had, my ezcema went away and STAYED away. I read something once which made a lot of sense regarding dairy products... humans are the only creatures to continue drinking milk after weaning. Milk is supposed to be for the baby of the species which produces it not for any other. So why do humans not only continue drinking it after weaning, but drink the milk of another species and wonder why they develop intolerances to it? If you think about it, it's crazy. It would be better for us to milk lactating mums than cows, at least that would be our own species!

I would not call Starflower oil a CURE as some have done here. It doesn't CURE the problem, to state that implies you take it for a while and it's gone forever and you can then stop taking it. NOT THE CASE. You have to take it daily for the rest of your life for the ezcema to go away and stay away. If you stop taking it, it comes back. I found if I was late ordering my supply, as quickly as the ezcema went, it came back (within a few days). However, I would sing the praises of starflower oil to anyone looking for a better option than steroid creams. It's easy to take, easy to do, effects more than just your ezcema (it works on the skin as a whole so I found that any cuts or bites or blemishes healed quicker, the appearance of my scars improved and my complexion (even though it has always been clear) was better as well), isn't that expensive, widely available (in the UK I know of several online health stores which stock it... not sure if I'm allowed to name name's but the leading high street one does at quite a reasonable price) and is simpler than applying endless lotions and potions. 2 pills a day, job done, ezcema gone. If your ezcema is terrible you might find it takes longer than a few days or doesn't disappear completely but I would place money on the fact that you'd be shocked and very happy with the results!

My little toddler (16 months) is displaying signs of ezcema and has been diagnosed. The GP gave me a script for steroid cream, I threw it in the bin!! I had a feeling it was ezcema but wanted it completely diagnosed before acting on my suspicions by trying out some SF Oil on him, just in case it wasn't. I can't believe he was given steroid creams!! A baby's skin is so incredibly delicate you have to be VERY careful what you put near it. It's also quite thin so the steroid would be absorbed really easily into his blood stream! I'm not putting it on him, no way! Instead I'm ordering a tub of cream with starflower oil in (obviously he's not going to take a pill) and will see if it works as well topically as it does internally. If not, perhaps I will try breaking open a capsule and adding it to his breakfast (when he's really hungry and will therefore eat anything).

We'll see. If it works, I'll let you all no!

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Serkan on Tuesday, June 05, 2012 - 02:33 am:

Craig LazarukPlease Edmonton! This city lives for Edmonton Oiler Hockey. If this deal is not reached then there very well could be a good chnace that the team would no longer stay in a sustainable market and be re located. Something im sure every fan would hate to have happen. re vitalize the down town. IT NEEDS IT! with the new Epcor tower, thats a great start. Build the new arena and it will be a great place to socialize and to also have another well known landmark to people visiting other than the old West Edmonton Mall. Sometimes you just need a little change. Like taking the same route to work everyday, change it up, spice it up and add this new AMAZING facility that the Katz group has presented and one that everyone will love!!

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Lina on Sunday, April 22, 2012 - 04:45 am:

my mum had the same problem with me when i was a baby.i saw a diacitien and i was put onto a diary free diet.it has worked wonders ever since and i am now 21.you have to be very careful though, cows milk is in many things.i use (and have since i was a baby) goats milk, goats cheese, dairy free chocolate is a must when she gets older!get an appointment with a diacitien through your doctor, my mum found seeing one such a relief, because they are obviously trained in nutrition and set out a diet according to your child's needs.my mum was given a specific diet plan for my eczema and what i should and shouldn't be eating.i have it to this day and still use it!

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Mich on Sunday, October 02, 2011 - 09:30 pm:

Any support groups in south east London, Greenwich borough? Or nearby? Need support. Mich x

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Mina on Sunday, September 11, 2011 - 12:23 pm:

You keep it up now, unedrsatnd? Really good to know.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By debbieholman on Monday, November 23, 2009 - 01:09 pm:

Dear fellow eczema sufferers,

I am a final year textile design student at Brighton University. Having consulted Vikki Haffenden, our technical demonstrator, she felt contacting support groups might be beneficial to my project.

Accounts and anecdotes from anyone interested in my project would be fantastic. What you've tried, where you get eczema worst, what sort of product you wish was out there. Anything to do with your condition will help with my research.

To explain briefly, I am looking at yarns and techniques which can be used in designing garments to alleviate the symptoms of eczema. In addition I am also looking at how colour can help well being. I am hoping to find a company in the UK that manufacturers mircoencapuslated yarns with for example aloe vera for its moisturising properties. I've researched other materials such as seaweed, milk and silver and understand these also have well-being factors, but I would really like to access microencapsulated yarns as I feel this would take the project one step further. I am also looking at how seams and labels in garments can irritate skin and whether garment construction can address this issue.

As a side line to this project I am hoping to design and make jewellery like pieces to wear around fingers, wrists, elbows and other problem areas to release the well-being moisturising benefits of the yarns I hope to source. I've looked at your work on ring splints for arthritis and really like the idea of developing aesthetically pleasing products in place of the medical alternatives that can some times be less than pleasing to the eye!

I hope this all makes sense at this point. I'm very excited about this project as I am a fellow eczema sufferer finding it particuarly hard in the winter to find wool alternatives and battling with constantly itchy skin. I hope you might be able to help me in someone way with my project. I very much look forward to hearing back from you all.

Yours faithfully,

Debbie Holman (debbie_m_holman@hotmail.com)

L4 Mdes Textile Design

Top of pagePrevious messageNext messageBottom of pageLink to this message   By JKJ on Tuesday, March 24, 2009 - 04:42 am:

I have a son who struggles with eczema and it runs in the family (my nephews struggle with it as well). The only thing that has worked for us is called Renew lotion from a company called Melaleuca. They have all sorts of great things and all their product are chemically free/naturally based. They are good for people who struggle with eczema, allergies, asthma and psoriasis. I loved it so much that I decided to tell everyone about it and how to get this great stuff (i became a rep after using tha lotion and my sons eczema was gone in 2-3 days). Bonus...anyone who has spent lots of money on stuff that never works, does not have to worry about that again with this company cause they have a 100% satisfaction guarantee and thats an empty bottle guarantee. So you can try the lotion, use the whole bottle and if not 100% satisfied, you can return it to the company for a full refund. Amazing. For more information please contact me at julie_gehl@hotmail.com
Trust me, its worth trying!
Please indicate in the subject field that you are replying to a message posted on this site! Thanx.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Coolannie29 on Monday, November 12, 2007 - 07:52 pm:

Hi People. I'm 12 years old, and I have suffered eczema all my life :(

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Jacka1 on Sunday, July 29, 2007 - 05:37 pm:

STARFLOWER OIL

Further to the comments of Martin 606 below, I too have found Starflower Oil to be nothing short of miraculous in curing my eczema.

I've had the condition all my life, but during the last three years it flared up catastrophically and consistently, covering my arms and legs and much of my torso in a rash which was virtually impossible to treat even with strong steriods because of the sheer amount of coverage.

As someone used to coping with moderate eczema, it left me truly at my wit's end, and nothing seemed to work except UVB light treatment, which can only be used to a certain extent because of the associated cancer risk.

It was a local pharmacist who suggested, after hearing how my condition responded to UVB, that I try Starflower Oil. Having tried hundreds of remedies I started taking 1000mg capsules with very little expectation of success, but within a week the rash began to improve dramatically.

I have now been taking a capsule a day for about 6 months and my condition has improved beyond my wildest dreams. Save for a couple of stubborn rough patches on my elbows and ankles, the eczema has disappeared.

I'd previously tried using Evening Primrose Oil, with little success, but Starflower Oil (which has higher concentrations of Gamma Linolenic Acid than Evening Primrose Oil) has been a Godsend.

Of course, this is anecdotal rather than scientific, but I would recommend ANYONE who suffers from eczema to at least try this stuff. It isn't expensive, and it just might work!

Jacka1

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Jimbob on Tuesday, November 21, 2006 - 05:29 pm:

Hi Martin606

My son is 2 and has suffered with eczema since he was 6 weeks old. Last year he went through a period of about 3 months where he was in and out of hospital it was that severe. Since then we have stopped using steroid creams and petroleum based emollients and have supplemented his diet with probiotics and flaxseed oil. This has worked quite well but he still gets itchy and is certainly not cured. I am interested in your claims of starflower oil and would like to know what dosage you gave your daughter.

Kelly

Top of pagePrevious messageNext messageBottom of pageLink to this message   By martin606 on Tuesday, November 21, 2006 - 10:46 am:

Dear Everybody

My name is Martin and I am a proud father of a 9 year old Daughter. I reside in Brighton in the UK.

I am about to tell you of a CURE for Ecemza!

I must stress at this point that I have already cured over 50 children, I cannot help but start a conversation with parents when I see their little child suffering from this dreadful condition when they need not.

Now please bear in mind that I am talking of an ABSOLUTE CURE, not just to treat the condition. This product is 100% natural and can be bought in your local health store.

The product is called...

STARFLOWER OIL.

You can take either 500mg or 1000mg. There are no side affects whatsoever and you can come off it at any time. You should start to see benifits within a month and almost disapeared within 3 -4 months. Starflower Oil works internally which is the only way to CURE Eczema.

All the topical creams will RELEIVE symptoms but will not CUREit. The reson you itch and scratch is because your skin is dry to the point of splitting and this causes you to itch and scratch therefore breaking the skin.

Starflower Oil costs about £3-4 here in the UK and I promise it will cure the Eczema.

I kept my daughter on it for a year when she was two.

For those of you who want to talk with me in person you can reach me on 07941 923903.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By lucy on Thursday, October 28, 2004 - 08:17 am:

Hi Barry, I have had eczema for 44 years and have decided after trying everything, to cut out dairy produce from my diet. I have started using the goats milk, which does taste slightly different but is perfectly palatable. This is only my second day and already I have noticed a difference. My skin does not seem to be as red and itchy. How do you find the Diprobase? I seem to react to it. I have started using "Aveeno" cream, it is an oatmeal based cream and is extremely soothing. It is available in Boots (if you are in the U.K) at around £6.00 a tube, a little goes a very long way. It was recommended on this site and I thank whoever it was for bringing it to my attention.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By barry on Saturday, October 23, 2004 - 12:16 pm:

Have suffered 30 years plus and have tried everything to no avail.A few months ago went dairy free ie no milk or cheese, substituted with soya milk and had a little relief.
I was unaware that semiskimmed goats milk was now available in supermarkets until about six weeks ago ,it tastes a lot better than the stuff I tried before!
Started the goats milk and have not used a steroid since. no more itching, bleeding or embarrassment. rashes have healed and I just use diprobase to keep skin feeling comfortable. What a difference to my life,just had to share this with you.
Was given this advice years ago but couldn't stomache the strong untreated goats milk then.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By PATRICK on Saturday, September 25, 2004 - 11:28 am:

NEED ECZEMA GROUP IN CALIFORNIA U.S.A.
PLEASE RESPOND IF YOU KNOW OF ONE
PATRICK 310 379 3050
HATTRICK33@NETZERO.NET

Top of pagePrevious messageNext messageBottom of pageLink to this message   By greeneyes on Saturday, October 25, 2003 - 06:51 pm:

I need advice on support groups in Hudson County, NJ

Top of pagePrevious messageNext messageBottom of pageLink to this message   By jay180965 on Monday, September 29, 2003 - 09:57 pm:

hi marian in the same area as yourself doesnt sem to be any in this area. i have a 1 yr old daughter who has suffered from eczema and related asthma since she was 3 months old. i have tried all sorts of treatment recommended by her dermatologist whom she sees every 3 weeks but to no avail. we are just trying a treatment involving no steriods but it has been unsuccessful so far. what kind of advice have you been given?

Top of pagePrevious messageNext messageBottom of pageLink to this message   By marian on Sunday, August 24, 2003 - 05:08 pm:

Does anyone know of any support groups in County down area in Northern Ireland.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Hopeful on Friday, August 22, 2003 - 02:08 pm:

Hi everybody,

A new support group in Gillingham (Medway Towns) in Kent is holding its first meeting at the following venue: The Sunlight Centre
105 Richmond Road
Gillingham, Kent

Date: Friday 29th August 2003
Time: 6.30-7.30pm

Anybody who is suffering from eczema or carers of sufferers are welcome. Margaret Cox, Chief Executive of the National Eczema Society will be there talking about how to cope with eczema and her own experiences regarding this skin disorder.

For more information contact: 01634 338608
07752 359578

Thankyou.


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