Di Has Stories…

(and they’re all true)

A Letter to those without Hereditary or Idiopathic Angioedema April 17, 2007

Filed under: being a sickie — Diana @ 11:24 am

One of the sites I visit regularly is Chronic Babe, which is targeted towards young women with chronic, and often invisible, conditions. Today, one of the things that came through was a webpage that had an Open Letter to… dealing with different conditions. I have updated one for my specific issue, hereditary angioedema. Here you go:

A Letter to those without Hereditary or Idiopathic Angioedema

Having angioedema means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about angioedema and its effects, and of those that think they know, many are actually misinformed.

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn’t mean I’m not still a human being. I sometimes spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d still like to hear you talk about yours, too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. that’s all. It doesn’t mean that I’m not swollen, or in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!” I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of angioedema.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on, it applies to everything. That’s what angioedema does to you.

Please understand that angioedema is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to “get my mind off of it”, may frustrate me to tears, and is not correct. if I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctors and I am doing what I am supposed to do.

Another statement that hurts is, “You just need to push yourself more, try harder”. Obviously, angioedema can be experienced internally, such as in abdominal attacks, or can be viable, such as extremity and facial swelling. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, angioedema may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, take these pills or get to my doctor or hospital, now, that probably means that I do have to do it right now. It can’t be put off or forgotten just because I’m somewhere, or I’m right in the middle of doing something. Angioedema can be fatal, does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of angioedema, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with angioedema (see HereditaryAngioedema.com for more information). Drug companies are working on treatments for us right now, but in the US, there are options, and those that are available have very negative side effects, and aren’t able to be used by everyone. It’s not that we don’t want to be better, or aren’t trying all of the available options.

If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Angioedema is hard for people to understand, because it is so rare. Even those of us with it may never have met someone else that has it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the “normalcy” of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.


45 Responses to “A Letter to those without Hereditary or Idiopathic Angioedema”

  1. Diana Says:

    Hi..be strong. I have Idiopathic Angioedema n i can relate to how u feel.. 🙂

  2. Dia Says:

    I have angioedema . I was diagnosed with it about 3 years ago. My eyes and mouth will swell some times. My fingers and hands will swell. My feet will swell all over. I get hard spots on my stomach when I lean repetitively or my under wire of bra digs into my chest. I take Zyrtec to help with the swelling. I take it regularly once daily and also when I start to fill it coming on. I don’t know if it really helps or if the attack is just not as bad at that time. But, I still use it because my doctor says I should. I use cold packs or hold cold cans when it gets really bad. I will take hot baths also some times this works too. The only thing about having this is I work in retail and also in a pharmacy too. I have to stand 8 to 10 hours a day. Some of the daily activities are repetitive and I know that I will have a reaction then. So, all I can do is just cope and hope that it will just stop like some people have reported happens. I also hope that anything I have said helps you or if you have any suggestions for me please let me know. It would really help me to just cope with my angioedema.

  3. Naomi Says:

    Hi. My name is Naomi. I have really never gone to the Doctor to discuss my issue with angioedema. It was my seventh birthday and my family and I noticed that my face was swollen and my hands had these bumps or welts on them. From there I felt really ugly, I couldn’t stand to look at myself. I went to sleep and woke up to find my face a little swollen. It was better than before.
    What causes this to my body? How did I get this? What can I do to understand my bodies reaction to this?
    More worse, I am exeriencing angioedema everyday now. Does winter make it worser?
    I get them only when I take shower, bathe, touch cold floor, etc. When it is summer/spring and fall I don’t usually get them. They are less severe.
    In thougths of us all, we will survive.

  4. elizabeth dobson Says:

    thankyou so much for this. i have printed it off and will distribute to my friends and family. i have had angio edema for 4 diagnosed. i hope this explains to others how i feel, thankyou, elizabeth dobson spain

  5. DINA Says:

    Hi, Ive been up and down and every place between as a result of my idiopathic angioedema. I was got my diagnosis in Mayo Clinic 11yrs ago and the process of exams and tests almost killed me twice! I landed up in Critical Care at Mayo and finally got my Diagnosis of Idiopathic which didnt go on to help me much. Over the last 11 yrs I have struggled and learnd what things trigger me and what things can kill me. I have had more prednisone and benedryl and epi pen experiences than I can count. What really changed my life was this…. Detoxification and the DAN defeat autism now movement for biomedical treatmets. You may think what ? Yes DAN and the biomedical detox treatments have helped me live a normal to near normal life. I work full time as a nurse and have not been to swollen to work in a verry long time.Years. contact me if you want more info on the detox protocols or look them up I go to Corey’s Place http://www.coreysplace.ca in Thunder Bay Ontario to help with my over toxic burdened and hyper active body which accounts for my angioedema. Look up glutothione and most likely if your like me my angioedema is directly co related to my body’s lack of detox abilities and I hold onto all toxins at a cellular level then a histamine response is triggered and histamine cascade known as angioedema to take place. dmostow@gmail.com

  6. elizabeth deveaux--A.K.A Ierne Says:

    Hi, again told nothing can be done “live in a bubble” says one,”take beta blockers” says another, “they will inhibit the adrenelyn”, he states ,”do not use them because your Epi-pen will not save you when you need it durning anaphylaxis,” he warns” ” Nothing we can do” ,” live in Hawaii ,”says another,”Dr. Kavorkein where are you some one please help me”, God bless p.s. sun allergies as well! ?????????? Only one door left please open another door for me I want to live!

  7. Rene Says:

    Please visit http://www.haea.org for more information on types of angioedema and new treatments. Print off to discuss with your doctor

  8. Anne Says:

    have just been diagnosed with idopathic angioedema. Work not happy with the volume of odd days off I am having; Sick of steroids; sick of epi pens;
    But I love your letter, had a cry on reading it and the responses; Its nice to know there are others out there, I feel so isolated, unsure, scared. When will it happen again? why dos it happen?
    keep in touch its a life line…..Thanks

  9. Nikki Says:

    It had been nearly 2 years since my last “puffy” spell. Just what the heck was that all about my husband and I would joke. Nobody could really tell me what caused it, or how to cure it. In the back of my mind, I always wondered when the day would come that I would wake up with swollen lips or tongue or entire face. Well its back. Started with the feet then the hands, and like an alien trapped in me, its moved to my face. The letter has helped me, I didn’t put the exhaustion with it, but everytime I have a flareup, I can hardly get out of bed. Its hard not knowing day to day if you are going to look like a freak. No one in my family understands, and my doctor calls me one freaky lady-nice right



  11. Suzy Says:

    Hey Diana, I’m Suzy 🙂 I have Angioedema too, have had it since I was 14 and I’m 25 now. I won’t bore you with all the details, but if you ever wanna chat or email or something, let me know. Take care 🙂

  12. Fiona Says:

    Thank you Di and everyone who has commented – how wonderful to find other people like me in the world! I was diagnosed with angioedema aged 14 and am now 29. I get the red welts and hives, the puffy eyes and lips and the associated itchy pain and fatigue. The only thing I have found that works is a combination of Zyrtec and Zantac every day, but I still suffer the symptoms. I also find it helps to keep my life extremely balanced – plenty of rest and sleep, good food, exercise and keeping stress to a minimum. I too have suffered from people around me not understanding, even those I have lived with. On top of dealing with angioedema, we also have to deal with those that think we are exaggerating! Lets be strong and tell these people not to judge us, but to believe us. Showing them the above letter from Di would help I think. My struggle with this condition led to depression about a year ago. I’m now on antidepressants and feeling better. I would love for all of us who suffer from this to form an on-line community so that we can share and support each other. Does anyone have any ideas how we could start an on-line community? Please email me to share your experiences. Stay strong everyone, at least we have each other!

  13. Aprile J. Says:

    HI there, thanks for writing this letter I was just Dx w. idipathic angioedema after 6 Er trips in 7 days. I am also a 2 time brain tumor survivor I have Lupus & spondylitis. I am epileptic as a result of brain surgery. I am 35 have 4 beautiful, happy, healthy children. I run a household and work for the government part time. Before my Dx I was taking 37 pills a day and doing chemotherapy inj twice a week now what ? Now I take, 54 pills a day have to carry the epi pen and teach just about everyone who caomes in contact w/ me how to use it. Can’t imagine why my body is toxic. I will definetely look into Detox treatment …. Thanks so much for your positive outlook.

  14. […] A Letter to those without Hereditary or Idiopathic Angioedema […]

  15. dreamluvr Says:

    hi diana,
    i really have no idea why i decided to reply. coz 4 one thing i feel good 2 know i am not the only one out there. but i would love to tell you my fingers are all swollen up as i type this to u but i am also trying my best here to get into a med school and bcome a doctor as i have always wished for. i mean i know angioedema is a disorder n does freak us out, but pl don’t feel all down bcoz of it. i too hate it whn ppl stare at me or tell me it’s bcoz i don’t try enough and blah blah blah… but oh well thats what all humans. each one of us feel like an expert seeing some one else in distress. but just try one thing and that is to luv 2 liv ur lyf n liv 2 luv it. coz its ur lyf n nobody can love it more than u. i always feel thankful to god that he didn’t put us through any terminal disease. next time you feel down jus think abt all those kids out there who are suffering ton loads more than us and think of doing something to make em feel better.
    as for suggesting a cure: i really dunno but what i do is treat it like it’s my friend and well it’s wierd but each time i get an attack i tell my mom “hey my frnds here chk on me again”. it kinda makes me feel btr. hey thrs one thing u can do for me, wish me luck and include somewhr in your prayers dat i be able to make through my entrance xms to a med school. and always remember nothing should stop you from doing everything you really want from the bottom of your heart.
    bye n tc buddy

  16. katherine Says:

    It began suddenly after visiting my mom and sharing a drink with her,she has had the swelling for years though not till after I swole up did she mention it.Immunologist labled it a “virus” ,doctor at the clinic labled it allergies,but the hospittal labled it after 10 visits in less than 2 weeks idiopathic angioedema.I still worry its contagious and I will be responsible for another getting it.
    I have been diagnosed with Fibro 10 years ago,but always felt it was a vague diagnosis,started 4 years ago playing with my thyroid and adrenals and then this.I have had panic attacks from numerous assults and assessed the idea of supporting my adrenals when my mom mentioned a connection and one thing lead to another and again this is where I am now.I am a driven person that refuses to be kept down,homeschool my own and 2 stepkids,dayhome,12 animals (chinchillas and degus have to be kept at a distance) very creative and just thanking god for being inspired wether spiritually induced or herbal energy-induced.
    I am learning that positive energy can do amazing things nuerologically and that the law of attraction can bring amazing people into your life..and that in this life I am still mere human,and get reminded I am sick because I chose not to fully wrap my head around being kept down.I would be living pissed of and am to much of a free spirit to be ok with that.

  17. Ryan McGraw Says:

    I was diagnosed with idiopathic angioedema at the age of 8. At that time only 200 people in the world had this according the Dr.’s in Chicago. To this day, there is still no reason for attacks. I also have severe asthma! I carry epi-pens and a neubulizer everywhere i go andhave spent countless hours in the hospitals. I have been revived several times. I was told at 8 if I continue to play sports I will die.

    that was 1989.

    By 1999 I had a full ride scholarship to Coastal Carolina for Baseball. I became a NCAA record holder in stolen bases and a 2 time Division I All-American. San Diego Padres later drafted me to play professional baseball.

    All the while coaches told me I was weak, pick it up, I am lazy etc. My teammates drove me to the hospital multiple times to get me to breathe again.

    I have since gotten into the real world and direct development at a commercial construction company and am happily married.

    You can get live life, accept challenges, and rise above this.

    Stay positive and keep a mentally strong and most importantly…Keep the Faith.

    Ryan P. McGraw
    Saginaw, MI

  18. Laura Says:

    I too have idiopathic angioedema. I loved the letter, because it put words to my feelings. I sent it to my sons, best friend and husband to read. Doctors can’t help me. To make matters worse I was diagnoised with type 2 diabetes a year ago and all the diabetes meds thus far trigger the flares. Anyone know any place in Florida I can seek help?

  19. Savanah Says:

    God bless you sweetie. I have suffered from angio-edema (ideopathic) since I was an infant, and I know how it feels, I know everything you’re feeling. My final (hopefully final) attack was at the age of 21, I am now 26. Be very careful, when you have one auto-immune disease you are very likely to get another, right now I have Hashimoto’s, and it sucks. Keep getting your bloodwork done, and report any new or unusual symptoms to your Dr. right away. Remember this, as weird as it sounds, meditation can help. The reason I say this is because any stress (and obviously angio-edema is a major stressor) can and will exacerbate your symptoms. You can even have an attack brought on by stress because your body is so sensitive to change. An hour devoted to dark silence, breathing, a good smelling candle and nothing more can do wonders for you. Granted it’s not a cure, but it will help you some. Take care.

    • Laura Says:

      Thank you for your response. Now the doctor told me I have hypothyroidism (low thyroid) and he put me on Levoxyl 50mcg per day. Within 4 days of taking this medication the flares have started again! I am at a loss of what to do. The flare ups are not as bad as they were when I tried to take the diabetes medication. However, my blood sugar levels are showing spikes with this medication. I am awaiting a call from the doctor’s office.

      Thank you for the response. It meant a lot.

  20. Julia Says:

    Hi. I have idiopathic angioedema as well. I also think that a lot of people do not understand the condition, or think it is strange that I read labels, or can’t eat certain foods, or don’t feel very well….or can’t physically move. I hate when some people say, oh, it couldn’t have hit you that fast or something along those lines. I just try and explain the condition as a bee sting, how some people swell up, and say that a lot of different things cause this to happen to me. Anyway, good luck in your endeavors. This is truly an annoying thing to have! Sometimes you never suspect the culprit in your attacks!

  21. Annie Says:

    Thank you for writing this. I have had severe unstable angioedema for 2 years and it has completely changed my whole life. The variability and unpredictability make it a hard condition to live with: takes a lot of physical, emotional &spiritual energy. I get laryngeal oedema: varying degress often and I’ve had 5 medical emergencies into the resuc room with IV adrenaline etc -I still find this very scary. It doesn’t seem to go away. I( miss exercising ( pollens make it very bad quickly as does getting hot internally, externally); I can go into anaphylaxis too and react to medicines, smells, perfumes and foods. I have some days where I can’t see light at end of the tunnel and others where I can’t but still feel hopeful.
    Thank you for writing what you have-I don’t feel so alone.

  22. Laura Says:

    Wow! Thank you so much for writing this. I’m 39 and I started suffering from angioedema one year ago. I didn’t even really realize what it was until tonight. I’ve had a few different types of doctors working on the problem. Just this week I learned that I probably have Hashimoto’s disease. I’ve known that I have celiac disease (another autoimmune) for about a decade.

    Strange as it sounds, I’m incredibly relieved to find that others share this problem. Until tonight I thought I was alone in having a complete mystery disease, which compounded the panic and depression that we probably all naturally suffer from with angioedema.

    My heart goes out to you and I truly hope you’re able to find your remedy soon. I’ll report back if I find anything that works for me.

    Much love,
    – Laura

    • Sunita Says:

      My best friend also has idiopathic angioedema for about a year now. It’s the scariest thing to see her go through this and not be able to help her. She wen to go see an immunologist and went through all the tests, she doesn’t have a thyroid condition, and she isn’t allergic to anything. She gets an attack every three or four weeks, it’s just so random. Does anyone have any suggestions on what can be done during an attack to help with the symptoms to pass more quickly? Also is there another kind of doctor that she should be seeing? Please give me any information that can help her, I hate to see her go through this and not be able to help in any way.

      • karen Says:

        Hi Sunita,
        I have been reading all these letters on people with angieodema, I also have had it for several years, doctors have not been my friend, searching the web to help myself. I have found something that helps me when this so called hive swells my face, has to ordered and for some strange reason whatever it has in it calms it. it called Histarix, the web site can be found on http://www.treatfast.com the company called Leigh & Williams. If your friend is still having this problem have her check out the web site. hope she will try it, good luck, hope she will soon find help, I am still searching for the magic to make them stop for good.

  23. Martha Says:

    I have supposed that I have angioedema and that is probably hereditary as my grandmother had the same symptoms. I also have celiac disease as does Laura who posted recently. I asked my doc to please check for HAE and he got up in my face and said that he would if nothing but to prove that I did NOT have it. Says this itching and swelling and burning pain is just anxiety. Well, HE has given me anxiety! Has anyone else had itching and burning pain that seems to be related to sensivity to the cold for the most part (also seems to be related to rough clothing)??

  24. Alisha Says:

    Thank you for writing this letter, it felt like I was reading a letter I had written myself. I was just offically diagnosed with idiopathic angioedema yesterday, I have been suffering the symtoms for almost a year, the first was in my chest and back and I was in so much pain I had to go the the emergency room, after seeing countless doctors and “ruling out” everything else, I was left with this mystery illness (which is what we call it at my house) I have a small child, a seven year old daughter and this disease has changed my life so much, I can no longer go out to play with her, because if I do too much I will not be able to work the next day.The spots have been all over me, from feet to waist, I have never had them on my face but I have had many internal problems, the abdominal cramps are so painful. But reading your letter and the comments left by so many others let’s me know I am not alone in this fight.
    I am very lucky to have such a wonderful support system, I have a wonderful family and an amazing husband who supports me all the time, and I know they are trying to help me with their internet diagonsis’s and rememides but I dont want to try any more medicine, I am tired of the different vitamins and I have had more blood tests in the last few months than I ever thought I would have in my life. My family is not satisfied with my idiopathic diagnosis, and want me to go further, go to more doctors and see more specialists, but I dont want to. I feel overwhelmed and need some time to deal with what I am going through, but your letter has helped me, from the bottom of my heart, THANK YOU.

  25. Joseph Charles Peacock Says:

    Hi, i’m a 28 hopefuly going to make it on 30 and have this miserable disease as well. i can relate to everything myself into this letter as well.

  26. Susan Says:

    My heart goes out to you. My 8 year old who just finished chemotherapy in Sept 2008 has been sick since Sept 2009. Joint pain, abdominal pain, asthma,high blood pressure and swelling of her lips, tongue, rashes all over her body hives etc..etc.. We were just told she will probably be diagnosed with idiopathic angioedema. I just want her to wake up in the morning and jump out of bed like a healthy 8 Yr old. To be able to run and play without feeling bad. Her doctor told us it was treatable but she may have it the rest of her life. Others told us she may and hopefully will out grow it. I do hope you get relief. If my daughter feels the way you do I’m glad you explained it.

    Take Care,

  27. Anne G Says:

    I think that I am getting an idiopathic angioedema diagnosis. I am 44 and about 5 months ago, I started having eyelid swelling (just puffiness) which turned into just severe swelling under my eyebrows with redness to my eyelids and burning pain in the area. I have gone to many doctors. I would like to know more about triggers, symptoms, etc. Anyone want to share? I would also like any advice on treatments that do not involve prednisone. I cannot stand that drug. I am a very active person and I do not care for the weight gain that prednisone causes. Not to mention the diabetes, osteoporosis…. thanks!

  28. Karin Says:

    i was just diagnosied with angioedema and also have very severe allergies. Thankyou for this letter. It seems we take one day at a time and people do not get it.I was asked by a pastor if I had an anxiety issue? I do not I have had to be placed on a ventalator 4 times in 7 months have had 3 other trips to the er via ambulance requiring multiple does of epi and have had to take 4 different antihistimines a day just to keep me a bit a bay . I also developed really bad adhesions in my gut from all the swelling they tied my intestine and gallbaldder into a knot
    I am right now on the mend from a episode friday that would not stop and nobody understands why i am so tired on 120 of predisone and benydryl every 4 hours. Ty Ty for this letter .
    I am only 40 and have 3 kids that are afraid of mom dying from this.

    • Annie Says:

      Dear Karin, oh what scary experiences for you-my heart goes out to you. I hope you carry an Epi-pen and wear a medic alert bracelet. As my specialist wrote and told my insurer: there is very poor correlation between angioedema,asthma, urticaria and emotional factors ie anxiety, emotional factors, psychological stress do not cause these conditions-any stress is brought about by the acute, chronic and disabling nature of these physical problems!!! There is a lot of ignorance in our community about ours and other medical conditions and certain new age beliefs eg you choose your own illness , it is all an expression of your emotions haven’t helped and have led to lack of compassion. Many people mean well and need the light shone, gently eg brochure about the condition,listening to your lived experience. As for emergency amubulance trips, resuscitation room episodes where a team of half a dozen medical staff are working on you-that is such scary stuff let alone being ventilated and in ICU. I know after my various resusc room experiences especially the first when afterwards I was told I got there just in time and was lucky I didn’t die, I really needed to talk about what it felt like, including the thought in that room that I might die; then learning to go to sleep safely after such an event (I was asleep and in my dream someone was saying”Wake up now otherwise you’ll die” and I woke up and I was in a very bad way-anaphylaxis in my sleep; I slept with a night light on for months afterwards and had some really positive helpful dreams, and my son would talk with me about death and Buddhism. I also have one of those personal alarm pendants that I wear when at home alone (like old people-had to get over that one-but it helps and I’ve had to use it)I hope you find the people you need to share your fears with, to debrief with and to talk and share with your kids and family because it is very scary for them too. I am happy to chat 1:1 with you also.

  29. willie Says:

    This is such a relief I am not as big as freak as I thought I was. I have been suffering from angioedema and chronic uticaria for three years. I have been to several doctors. I do take claritin,zantac,benedryl, and allegra.I am constantly going to the doctor for this problem. I FLARE at least once a month.AGGREVIATING TO SAY THE LEAST.

  30. Sunny Says:

    Hi all,

    My best friend suffers from idiopathic angioedema. It started about two years ago and it comes almost every 2 to 3 months. She had seen an immunologist and of course webt through all the tests, but she isn’t allergic to anything(that’s why it’s idiopathic, there is no known cause or cure)

    Is there any type of treatment and what kind of doctor would she need to see? We live in Southern Utah and the doctors here aren’t the best. We are willing to go anywhere in the U.S. to see a reputable, good doctor. Does anyone have any suggestions? If so please let me know. I hate to see my best friend go through so much pain and torment. I want to help her through this as much as possible.

    Kind regards,

    • Diana Says:

      Sunny –

      I’d suggest getting in touch with the US Hereditary Angioedema Association (http://www.haea.org/). They have doctor referrals for docs that are experienced with angioedema, and a good support group. Good luck!

  31. Annie Says:

    Hi everyone, wow we need to celebrate:we are surviving despite having this scary, disabling,poorly understood condition! A lot of people don’t know about it and its effects including side effects of treatment-we need some media to pick up our story and to also include that at it’s worse eg throat/largyngeal swelling it can become life threatening (I carry an Epi-pen and wear a medic alert bracelet). Also, angioedema and some treatments for eg prednisilone do cause physical appearance changes including puffy faces and other body parts, significant weight gain.
    My specialist is considering trying me with a low dose of Imuran to suppress my immune system-hope my hair doesn’t start to fall out: to me this would be the “straw that broke the camels back” in relation to physical appearance….
    2 weeks ago my little dog (non-hair shed breed) died and I have felt so much grief:she has been my constant companion through this awful illness.I have lovely friends and my son and husband are supportive and they also have to go to work, do other things etc-my dog was always with me.
    Funny how many things I have developed significant and serious allergies too since getting angioedema eg perfumes and being near people with perfumes is a big no-no as I get increased swelling, asthma, laryngeal swelling; yet before I got angioedema I wore perfume and loved it!
    Thank you for setting up this website-it really helps to know that I am not alone. And for those newly diagnosed:hang in there , it is awful, there is often no reason, it isn’t fair: it is one of life’s “just is” and there are ways to physically, mentally and spiritually live as well as can be with this illness-I’m sure we each have a lot to share about positive survival that could help us all-perhaps we could include this on this website too.

  32. Annie Says:

    PS Forgot to say I live in Australia.

    • Rosie Says:

      Australia – in Hobart. Idiopathic AO. diagnosed about a year ago. No – it was not gall stone, stomach ulcer, hernia etc etc. Had a;; these suggested 198os to 2010. Age 50. Now happily Living on green and orange ‘coloured’ veggies, zuchinni and sweetpotato, rice, oats and corn products, hormone free chicken tofu, 100 percent rye bread. bananas (Have wheat potatoe (*white ones) and orange allergies.) lemons OK. I can tolerate panadol. single malt whisky and very light wines only. (whisky was a good gargle for a sore throuat during the flu – it is natural as opposed to lozengers.) I Eat nothing else but these things. Taking zyrtec but not holding the condition presently due to recent flu. About to try tranexamic acid. Yuck. Might try ionic footbaths too. Have cut out almost other medications due to contra indications including antibiotics. ( we found 7 drugs used in the last two decades had am AO warning on them). Still a few arrogant medical plonkers in private casualty trying to give them out too. Just stand your ground and demand the steroids and blood tests you need) Asthma medication still has to be taken. Can take no medications essentially now. Have taught the kids to wake me up when I snore. Sleeping yuck what a fearful scary concept, sounds like we are all struggling with that one a bit! Thanks for the body alarm tip, I also use a baby alarm monitor sometimes. Will get a nanna pendant though thanks. Trigger might have been a medication or a problem with the airconditioning at work or repeated food poisoning (weed killer or yellow food colouring). Work related stress is npw to be avoided because of adrenaline triggers. For treatment See Riminton at Concord Hospital Sydney or Dr Yu in Hobart if you need help in OZ. Good luck. Keep everything simple – no drugs, plenty of water, go slow days, nanna naps on the weekend! We can manage this together guys – try to get horizontal asap after 5.00pm to drain some fluid daily. . I am going to grow my own organic vegetables next. no chemicals. Bok Choy here I come! we will all have to rage against the night akka John Donne, lets go! Keep talking!

      • Annie Says:

        Hi Rosie, sorry to hear you have angioedema. My specialist tried the transexamic acid and it made my angioedema worse: whenever i agree to try something new they give 1/4 of a child’s dose to start with and they don’t want me taking any other medicines-so sounds like we have this in common; just recently tried Imuran:big no no and got a type of aseptic meningitis for 2 weeks as a side effect. I find the old prednisilone works best (I can’t tolerate anti-histamines as they are also anticolonergics.)
        Sleep can be scary: I’ve got some small LED lights size of a 50cent piece and shape of half an egg (from Ikea) and have one on all night and the light isn’t too bright. I also ended up with a nanna pendant and hey once I got over the fact then I felt “liberated” when at home alone and it works too as have had to use. I think your tip about rest, relaxation and being horizontal to help drain fluid is good and find it helps. I don’t like being puffed up (face, eyes, neck, feet, and nether regions) and 2.5 years of prednisilone had resulted in 10kg weight gain: great for the body image!!
        I have a good immunologist in Adelaide: Dr Anthony Smith-he is very human and good at his job. I’m still not allowed to travel on planes, trains (outside metro area) go overseas, or to country areas etc.
        Pleased to hear that your diet is helping you.

  33. Rick Says:

    Possible “real” hope? Check this out fellow angio’s:


    fingers crossed (eyes and toes too!)

  34. Maureen Says:

    I am just speechless. I have been suffering with this weird disease for over 6 years. I have stopped eating so many foods that I “think” might have been a trigger that it is just crazy! Been in the traum room, done all that for severe attacks. Recently I was in hospital for diverticulitis, and while there my tongue swelled way up so that I could not speak. My family told the people taking care of me about angioedema and it was if they were explaining it to them in a foreign language. No one on duty knew anything about it. This letter has done so much for my sanity. Thank you very much. Tonight I am having another random attack and I am scared. I take two Allegra in the a.m. and two Zrytec in p.m. daily and here it is again. 3rd attack in last 3 weeks. Huge hives all over inside of my mouth and inner corner of my upper and lower lips. Thank God it has not gone to my tongue like last time. I’ve taken double dose Benadryl and no hope. Going to have to take my emergency dose of Prednisone and call dr in the a.m. for new prescription for another episode. I felt so alone until I came to this site. Soooo frustrating and at times confusing and scary. I know it could be worse, but when it’s you, it’s you and your life. It is what it is!! Debilitating at times. Well, must go take my 60mg of Prednisone, and naturally I’ll be up the entire night. Again, I thank you all. God Bless & Happy Healthy Holidays.

  35. Rhonda Says:

    Beautifuly done. I just found out me and my daughter have hae. Can I please share your letter with my family? Thank you. Rhonda.

  36. Emily Says:

    Thank you so much for this..I have been suffering with this disorder for about 7 years now and this brought me to tears as I can relate so much. Thank you.

  37. Annie Says:

    Hi all, just a quick email to let you know that after 4 years of having diagnosis of idiopathic angioedema my Dr now says he is pretty sure I have mast cell activation syndrome disorder and that the angioedema is one symptom (major). There is some good literature on the web about this: there was more recently a medical/scientific meeting about this condition. He has also talked about a new treatment called Zolair which may help. An except from a website about mast cell activation syndrome disorder:

    “Many doctors are not schooled in Mast Cell Activation Syndrome ……..

    Try to avoid the common triggers of Mast Cell Activation Syndrome disorders. These triggers are different for each person, so you must work on finding out which one tends to aggravate your disease. The Mastocytosis Society names the following triggers to avoid: alcohol; friction; anesthetic agents; heat; antibiotics; infection with viruses, bacteria or fungi; bacteria or fungi; mold; certain foods; MSG; cold; narcotics, colors and flavorings in foods; perfumes; colors and flavorings in medicines; pesticides; plasma expanders (i.e., dextran); environmental toxins; preservatives; room freshener sprays; fatigue; fever; and sunlight.

    Read more: Mast Cell Activation Syndrome | eHow.com http://www.ehow.com/facts_5607242_mast-cell-activation-syndrome.html#ixzz1PxH1qEci

  38. Karen Says:

    Hi All,
    I to have been diagnosed with idiopathic angioedema, have had it for several years, been to many doctors, even dentists thinking it was dental. My angioedema shows up every 4-6 weeks, in the same place, takes out almost a week of your life. No reasons can be found, all testing shows is maybe allergies! You get so tired of doctors telling you they can’t help you, try this med, and that med, and you keep popping pills.. finally I made my husband take a picture when the swelling was happening, brought the picture to him, and still said he didn’t know what else he could do for me..wanted to send me to a hospital for more testing, don’t know about that.
    Anyhow, I have found something does help bring down the swelling of the hives, not a drug, but I have tried it have tried it and have had good results with it. It is a product called Histarix in Capsules form or cream, put out by Leigh & Williams, their web site is called:( http://www.treatfast.com ) I had my problem come up one day and had an appointment that afternoon, took 3 capsules, and put the hives down alot sooner than Prednisone, (at least it did for me) don’t quite understand how the ingredients work but I will keep this product on hand… it is worth a try and the ingredients won’t harm you.
    I just wish there was real help for this problem, Doctors think we are crazy until they actually see you.. we are not a pretty sight.. I guess all we can do is hope for help, and keep trying to finds things to help ourselves..

    You all take take, good to read all these letters,

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