My husaband is 28 yrs. old and was diagnosed with Cold Urticaria about 2 yrs ago. He has such a severe case we had to move from Pennsylvania to Arizona and is totally helpless cause he is massively limited to what he can due to this condition. I am not going to get into very detailed facts on how severe it is cause I can go on forever.. But he had to apply for SSI Disability cause he CAN NOT work because of it. What I am wondering, is there anyone else out there who has it as severe as he does? Are you on disability because of it? His hearing is finally coming up after 2 yrs of being denied (and if you know about disability you know the process is long). I am only 26 yrs old and has been the only one who has been able to bring in any type of income for the last 2 yrs and it has been hard for me and I am anxious knowing I may be getting some relief soon. But at the same time nervous cause there is a chance he can still get denied which would be devastating.. I am just looking for someone else who has a severe case of Cold Urticaria just to talk to and see how you have been handling it. This is such a rare condition, it is hard to find anyone who has heard of it, let alone understand it. I mean, how crazy is it to believe that someone is actually allergic to the cold?? People think we are nuts when we tell them this.. So please email me back so we can talk.. Thanks.. Erin ***@****
Hi. I go by the name curiousinindiana. You can look up my posts about cold urticaria. I posed the same disability question last year and you should look up the response that a doctor gave me. Please read my posts regarding my now 14 year old son. That will give you a background. An update to those posts is that when I took my son to his pediatrician in March for a yearly physical (when you read my post about how we discovered he had cold urticaria this is the same doctor, she is fairly young (mid 30s and knew what it was right away.) she mentioned to us that we should see an alergist since it had been about 3 years since the diagnosis and she seemed to think we were kind of avoiding certain situations instead of living and dealing with them. (I'm always afraid he will break out). Anyway, we went to an alergist that is affiliated with the University of Chicago Hospitals and he did an ice cube test on my son for 5 minutes with no reaction. He then continued the test for another 5 minutes and then my son's arm (at the site) began to itch and slightly welt). Doctor said he probably had a mild case of cold urticaria but that could change. Looking at the history of it being mild was ok but never let our guard down. Our treatment is as follows. If I think my son will be exposed to the cold and might break out I give him 1 10mg Zyrtec to help avoid a breakout. If he were to break out, I would then give him 1 to possibly 2 benedryl to stop it and of course we have epi pens for extreme cases. Here''s the thing. In August, less than two months after seeing this doctor when 8th grade started, my son got up one morning to go to school and it was about 49 degrees out. He opened the sliding glass doors before we got in the car to get the dog (he didn't need to do this) and was outside for less than 2 minutes (he had no coat on we were still getting ready for school). Shortly thereafter we get in the car and as we are pulling out of the driveway he said his neck was itchy. I said no problem lets go back in the house and you can get a warm washcloth to soothe it (I can't remember the last time he broke out) and at this point didn't think he was breaking out. We pull back into the garage, go into the house and now he has welts ALL OVER HIS BODY! This has NEVER happened before. If he broke out before it was more localized. I started with 1 Benedryl but because he is 14, 155 pounds I ended up giving him 2. The welts finally went away but he stayed home from school for the morning. At 3 pm he comes outside when school gets out and is in the car line less than 4 minutes, the temp is still about 49 degrees, gets into the car and has a few small welts on his neck!!!!!!! By the time we got home (24 minute ride) they were gone but I was devastated. I thought if this is getting worse what are we going to do! Since August, there has been no breakouts and I am not giving him Zyrtec unless I know he is going to be exposed to weather less than 50 degrees. I'm sorry I am going on and on but I feel so alone with this. No one has heard of it and it is so frustrating. Try to find my posts because I received an email last year from a guy your guys age who lives in Australia with this and surfs! Please email me with how severe your husbands case is and I read on the internet last year that a lady in California gets disability for her urticaria because it is familial. There are two kinds of urticaria one inherited and that is the one that seems to get the disability. But that shouldn't discourage you. Google it.
I am on disability. And I have a similar immune disorder. But this won't help you. Because I have many other immune disorders to. And all of them together is why I was approved 2 days after seeing the last doctor. First the med. doc. and then the shrink doc. 1 days after seeing this shrink, I was approved.
I have nervous dermatitis, and allergy to cold for one. When I get cold I erupt. And when I am nervous I erupt. And they both erupt exactly the same appearance and feel. And I think that when I am chilly and close to the shivering point, this simulates nervousness, so my nervous dermatitis erupts too.
Plus I have allergy to synthetics. Plastic "mostly soft plastics, the clear coat of all food cartons, and products using a box, polyester, vinyl, vineer, formica, and other synthetic.
Plus allergy to wood and thus paper too.
This nervousness inside when exposed to cold or allergies gets out of control and grows into paranoid states. Thus I had dug a big hole for myself and couldn't get out of it. Leading to other emotional problems and breakdowns. allergens to polyester can get bad, and cause my heart to race. Causing anxiety, an over active mind I can not slow down. Feeling depressed and worried, and sometimes very afraid something bad is going to happen for I feel that strong sense. So you see, even though I am allergic to the cold, I was approved for all those reasons. And being in my controlled environment where no allergens, warmness, and no one to irritate my nerves, I live a pretty decent life. Although in winter on the colder days, I can only go outside in the cold for minutes before I have to get warm. I also have Rheumatoid arthritis and when the other things wear my immune down, that come on and things get bad!
I do want to share a great story with you I just read after googling your husbands Dermographism. There is a woman who makes a lot of money off this condition. And maybe your husband can do like her. Thus not need SSI or SSDI. If this is severe like hers. Being that dragging something across the skin causes a raised red pattern, she decided to draw this way on the skin with the end of a pin. So lightly it doesn't do anything to the skin but when it erupts, it turns red. So then she takes pictures of the art she drew and sells it. And has gotten as much as 4500.00 for one picture! Pretty cool huh. She took lemons and made lemonade. Or did I read that in the second post. So that I address to you or the other person who posted below you.
Hi, I probably cannot help you. I am 26 with severe cold urticaria (I carry epipen). While it is unfortunate that you are all experiencing this condition, it does bring me some joy to find you here. That is because I have had such a difficult time getting people to take this condition seriously. I joke with a few of my friends/family members that I will wear an eye patch over one of my eyes just to get people to take me seriously. Of course, if someone asked, about the patch, I'd call them a pirate patch. (Sorry if this offends/confuses...the people I joke with have seen what I have been through). My family is even convinced that this condition is responsible for the death of one of my uncles. He was 21 and very fit and healthy and died without explanation when he went on a ski trip. He was found dead outside the cabin (no drugs/no foul play). I obviously don't know they details as he died before I was born, but once my sister was first diagnosed with this condition in 1990 and she talked to the specialist, my mom and the specialist determined that this was probably what it was. Anyhow, have faith. While I know this may seem hard to believe, there has been so much growth in the recognition of this condition. I remember writing and illness ethnography about this around 2002 and it was even hard to find info when I typed stuff into google. Also, when my sister was first diagnosed in 1990 (from a life threatening attack), some of the medical professionals were even in disagreement if the condition even existed (not specifically for my sister, but in general).
And some states will give you disabled parking permits. If you are having trouble, you may want to contact the local disability office (ADA). Good Luck
Its 12:49 AM and I'm convinced that I have uriticaria. I'm 26 yrs. old I have every single symptom you can think of. I have an appt. with my doc tomorrow, so that is when I will recieve confirmation. I find that I break out in hives in the worst places i.e. work since I work in a hospital and its so cold, then there's night clubs from standing outside waiting for entrance. By the time I enter I've already broken out in hives and I'm itching all over. No one seems to understand when I tell them. I had a break out yesterday in ralphs opening the door to one of the freezers. I tried to explain to my friends that the draft was making me itch but they thought I was being stuck up...lol. I dread holding cold things or even being in the cold...its good to know there are other people out there. I will continue to read and post comments. Thanks.
My son (he's 9) started getting hives after being outside over the winter. I watched him for a few weeks thinking it was an allergy to the laundry soap or bath soap but dispite the fact that I removed both of these the hives still continued. I made the connection with the cold and googled "rash when exposed to cold". To my surprise it came up with cold urticaria. I did the ice-cube test and it was positive after 3 min. I took pictures so that when we went to the Dr she didn't think I was nuts. It was the first case she has ever seen. Although his hives are mild I do fear the worst this summer when he goes swimming. I have him on a Reactine 5mg antihistamine daily and as long as he remembers to take it then he doesn't get any spots. He doesn't complain of an itch with them at all but he can tell he is getting them because he gets what he calls "funny feeling in the pads of his feet". I am not sure if this is something that some people out grow with time or if it is a lifetime thing once you have it? Looks like it is becoming more common around the world though. Best of luck to everyone.
I have a severe case of cold urticaria too. I have a hearing in May after two years of waiting for it after being denied. Just wondering if your husband won the case bc I too cannot go outside at all during winter or fall. Anything 60 degrees or below I break out in hives IMMEDIATELY. I have become extremely depressed over this whole situation. I also have to walk around with an epipen. On 2 occasions this winter, I felt like i was going to pass out after only walking one block to try to get my children from school. I now have my mom picking them up for me and feel like i cant even be a mother to my children :(
Hi all I am reading through your posts and know exactly how you feel I also suffer severe cold urtecaria which seems to be getting worse as time goes by I now can't hold a chilled can of pop as my fingers and hand starts to swell and welt. I don't seem to be getting anywhere with the consultant and it is now effecting me working, I feel so embarrassed as if I go near air con or if it gets chilly in the office I start to get a reaction all over my body and its very noticeable I feel so down at the moment and have started to call in sick and stay indoors which is kind of hard with three young children. I noticed that my three year old daughter became quite red and itchy after going in the garden for a while without a jacket and did not realise this condition can be inheatited
You are not alone. I am from the Bahamas and my daughter as well as i have this condition. I found out with her when she got out of the swimming pool she would be covered in red welts form head to toe. Take into consideration this is a warm tropical country. I have severe cold uticaria. I had to stay within my condo here for the entire winter months and not go outside for more than 3 mins in 70 degree weather. I would develop large and small extremely painful welts around the areas exposed to the wind first then secondary areas not even exposed such as my thighs. I went to the hospital to seek a diagnosis and or treatment and the wait was unbearable that i had to literally call for a car to save my life. I was in the waiting room about 30 mins and my blood pressure started to drop significantly; i began experiencing dizziness, arms legs and face felt like they were on fire and i began to panic. The ignorant nurse said i should have brought a jacket. I was wearing a sweater. There is no specialist here that can help me. I will be in the united states next week for two weeks to get some answers. Please feel free to respond. This condition is horrible; imagine not being able to go outside and play with kids at all and resigned to watching them from behind the safety of a sliding glass door.
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