I have been to about 5 doctors in the last 2 weeks equaling about 10 visits which has cost about $1000 or more. Family doctors, emergency doctors, a pulmonologist, and an allergist. The verdict is in. Finally, but it the thing that could change my life is a new medicine that costs about $900 a month.

It started with severe allergic reactions, which ended with paramedics at my school, a week of suffering with the inability to breathe, severe chest pain, and my skin feeling like it was eating me alive. All this and I was turned away from the doctor with medicine that couldn't stop my attacks. Actually I was having an attack at the doctor's office and he sent me away unable to breathe and hysterical. I thought I was going to end up dead or hospitalized.

So, I went to a lung specialist. I went short of breath, coughing, crying, hopeless, in pain, the nurse at my school. She informed me she used to be a nurse at a clinic of lung specialists (pulmonologists) and that she would get me an appointment that day. Bless her! I did a battery of tests, and saw a sympathetic doctor. My lungs were full of mucus and severely inflamed, so much so that I was put on a high dosage of steroids for 2 weeks, the highest dosage of 2 types of inhaled steriods possible in attempts to control the asthma.

The pulmonologist believed I could be a candidate for a new type of drug made from live cells that was an injection called Xolair. First I had to have a skin prick test with an allergist, and I had to have a blood test to ascertain my IgE (immunoglobulin E) level.

I went to the allergist, got pricked with 50 needles which showed a severe reaction to all molds, grass, trees, and I can't even name what else. The allergist said that he would never judge whether someone was an advocate by prick test alone, however, he said I am going to judge you because I believe I'm right and this medicine could change your life. He also said I was the most allergic person he ever met. He faxed the results to the pulmonologist, and the pulmonologist faxed the IgE results to the allergist. When I called the pulmonologist, he told me my IgE results. IT was horrifying. He said the normal person has an IgE of 100. An abnormal person is 400. My results showed a level over 2000. It was astronomical. Basically I IgE reacts when an allergen is inhaled or touched. In my body, it is like having over 2000 bombs ready to go off and anything I'm allergic to (which is everything) sets them off. When that happens, I can't breath because my lungs and sinuses swell with inflammation, everything goes berserk, and my skin inflames. Almost to the point of anaphylactic shock. (Which was the paramedic incident) It's getting tiring to see the shocked and pitying reactions of people when they see my results, or to see my problems.

All my life, I've suffered with this condition. I was hospitalized for weeks from birth to age 13 every year. I went to a specialist in JAcksonville, I got 4 allergy shots every week, I took handfuls of pills. I practically lived on steriods my whole life which has such bad side effects that I am permanently scarred, and which made me swell to terrifying proportions. (Imagine how I felt as an adolescent this way and how different I was.) I looked like a sickly, walking balloon. I used to be teased relentlessly because my skin (eczema) was always inflamed. It felt like I always had poison ivy. I was called acid face, asked if I had cancer, and no one wanted to be friends with me because they thought I was contagious or diseased.

Imagine my horror that it's happening again. Imagine my despair, and my hopelessness about not finding someone to help me. I've almost died many times and had to be transported from Camden County to Jacksonville Children's Hospital. Recently, I told my mother, my roommate, and my fellow teachers that I was afraid I wouldn't get help until I was turning blue and collapsed in front of my Kindergarten class.

Then I was given a little hope. The new medicine, Xolair controls this IgE level. It prevents or lowers the effects of this harsh reaction. It's a brand new drug developed from live cells. Which is why it is so expensive. This drug could make me a relatively normal individual and change my life.

This news is bittersweet. I now know and can imagine what life would be like. To be normal. I know there is something out there that can do this and end my lifelong suffering. I could do so many things I couldn't before without the worry of illness or pain. It also breaks my heart because if my insurance company will not cover it, I am lost. To know something could benefit my life and health so much, but be unable to have the chance to try it. It feels like someone that needs a new liver, but may never get one. If this company doesn't support me, I am also a ticking time bomb.

It's hard to feel helpless, it's hard to miss so much of teaching to find this solution. A solution that I may not be able to have an opportunity to know. It's the most difficult thing in the world to live my life knowing this all could happen again, only it could happen and I won't be as lucky.

I am taking allergy shots every week, I take 5 pills a day, and I do 3 inhalers twice a day. I feel like a walking pharmacy with an empty wallet, and a terrified psyche. The side effects are endless. Imagine my world, where I only take allergy shots, and one injection of Xolair every 2 weeks. Where I don't wake up in the middle of the night unable to breathe. Without my chest making me sob in pain, desperate for air.

I just want to breathe. Thats all. It's necessary for life, and unfair for me to have to struggle for. I don't want to worry about having to take a breath outside and whether or not it will take my breath away. I want to be healthy, it's not to much to ask for, but is an almost impossible wish.

I know I will have a good fight. My doctors will advocate for me, I hope the insurance company will see that this medicine will end up saving them money because I won't be visiting the doctor 10 times a week, or going to the emergency room, or having to spend hundreds of dollars on other medicines. I wish I were rich...then I'd have help.

Keep me in your thoughts, and I will let you know what happens. I may need some advocates and activists. If you have or know someone that is on Xolair, I'd love to talk to you.

A diary entry:

.::.2002-06-14::12:49 p.m.::.
ugly

Fear is in me.

I used to have long hair, hair to hide my neck and face behind so that no one could see me, see the red flaky skin…the ugliness. It use to hurt, swell and itch so badly I would have a baggy of ice and lay down with it on my face. The backs of my legs and arms use to itch so badly it would make my body tremble with insanity and misery. I always wore pants so no one could see my legs. I was so terribly embarrassed and self conscious about them. I would scratch it with pure ecstacy until it was raw, and then I would not be able to walk, or stretch my arms. When I was around 14 or 15, I had a crush on my best friend John and while pretending to be someone else, I asked him what he thought of Deborah (me) and I will never forget what he said. He said it looked like someone threw acid on my face. From then on I thought no one could love such a ugly person. I had to take drugs that only temporarily helped, drugs that made me fat and more ugly…but would take the condition away for a short time. Never long enough before it would come back. It was triggered so easily, and so hard to get rid of.

I had been to every doctor and dermatologist you could think of, and every treatment available. Once, my physician prescribed steroids in a cream. I thought this was a miracle ointment. I used it, and the eczema vanished on my face, and was vaguely on my legs or arms. I needed drugs less and less. I began to lose the weight naturally, because it was only the drugs that kept it there. With every good thing comes the sacrifice. The ointment made my skin very thin, and I developed horrible stretch marks on the backs of my legs and thighs from it….but at least the eczema wasn't as bad. I began to feel good about myself. My face looked normal. I began to look prettier…and as a few years passed, I saw the real me, minus the eczema. I could do things like go to the beach and the water not burn me, take showers without the water stinging me like bees. I could do active things, without the fear of getting too hot and breaking out. I felt human. I got boyfriends…I was still embarrassed about my marks and slight eczema that was still there…but I had my face… and I wasn't ugly anymore. I wasn't controlled by eczema, I started to gain some confidence. I could look in the mirror and be happy that I didn't see the ugly person looking back at me. I enjoyed running into old friends and them hardly recognizing me, or being shocked that I looked so much better. I began to get those looks from guys I never got before… and I felt like a swan instead of the ugly duckling. I was given a form of beauty and not so much of the pain. I cut my hair, since I no longer needed to hide behind it, and I wasn't afraid of people looking at me anymore. I didn't try to hide, and look at my feet as I walked where ever I was going.

Now, I'm afraid. My skin is feeling like it used to. Its getting red, itching and starting to get sore. It started on my legs and arms, spread to my neck…. And seemed unbearable. I had to take the drugs again. It felt so horrible and I was so afraid I would get fat again. It was a small series of doses. It helped, but the eczema came back. I was ok with it on my legs and arms….I could deal with that pain, it could be covered up. But not my neck and face. It started on my neck and under my chin. The skin getting rough and flaky and red, even on my chest. I scrubbed it to exfoliate the skin. Now, its spreading to my face again. Not my face! I looked in the mirror with so much fear that I don't want to see the ugly person again. I don't want the itchiness…the insanity not to scratch it. I don't want to be that person again. I don't want to feel inside what I felt before…but I do. It changes so much how you look because its all you can see. That's all anyone could see… I was given a little beauty and now, Im going to be…. Its all going to come back. Its not just attacking my skin, it attacks me inside too. Everything I feel…its like becoming disfigured. I don't know what I will do. I pray. Please don't give me the life I had before… Please take it away! I'd cry right now but it would only irritate my skin.

Asthma - http://en.wikipedia.org/wiki/Asthma

I am excessively "Atopic" http://en.wikipedia.org/wiki/Atopic

The medicine... www.xolair.com , http://en.wikipedia.org/wiki/Xolair

What is IgE? http://en.wikipedia.org/wiki/IgE

An excerpt from Wikipedia about IgE

Atopic individuals (people who suffer from true IgE-mediated allergies) can have up to 10 times the normal level of IgE in their blood (as do sufferers of hyper-IgE syndrome). However, this may not be a requirement for symptoms to occur as has been seen in asthmatics with normal IgE levels in their blood - recent research has shown that IgE production can occur locally in the nasal mucosa, hermetically without the involvement of lymphoid tissue[6].

IgE, that can specifically recognise an "allergen" (typically this is a protein, such as dust mite DerP1, cat FelD1, grass or ragweed pollen, etc.) has a unique long-lived interaction with its high affinity receptor, Fc--RI, so that basophils and mast cells, capable of mediating inflammatory reactions, become "primed", ready to release chemicals like histamine, leukotrienes and certain interleukins, which cause many of the symptoms we associate with allergy, such as airway constriction in asthma, local inflammation in eczema, increased mucus secretion in allergic rhinitis and increased vascular permeability, ostensibly to allow other immune cells to gain access to tissues, but which can lead to a potentially fatal drop in blood pressure as in anaphylaxis. Although the mechanisms of each response are fairly well understood, why some allergics develop such drastic sensitivities when others merely get a runny nose is still one of science's hot topics. Regulation of IgE levels through control of B cell differentiation to antibody-secreting plasma cells is thought to involve the "low affinity" receptor, Fc epsilon RII or CD23. CD23 may also allow facilitated antigen presentation, an IgE-dependent mechanism whereby B cells expressing CD23 are able to present allergen to (and stimulate) specific T helper cells, causing the perpetuation of a Th2 response, one of the hallmarks of which is the production of more antibodies.