Word Seeds

My story is one of a long line of misdiagnoses.

Almost a decade before latex gloves became standard for all health care staff due to the AIDS crisis, I had skin rash symptoms of latex allergy. While working in an elder and long-term care wing of a hospital in 1974, my hands began to display cracking, weeping sores which I attributed to a soap allergy and the constant hand washing. However, I was also daily handling rubber latex incontinence pads, catheters and other supplies common to the industry. When a patient said she didn’t want me to touch her because it looked like I had leprosy, the charge nurse got me a box of the new latex gloves used in surgery. Instead of getting better, my hands got worse, so I wore them nearly all the time to hide the problem even though they made my hands burn and swell. I quit the job and returned to college.

During a work-study job at a surgery clinic, I developed chronic bronchitis that lasted for 6 months until I quit the position. It did not occur to me that they were related.

During the next few years, I changed my career path to a non-medical one, but began to have episodes where I stopped breathing unexpectedly, or gasped heavily. I was diagnosed with a panic disorder, even though many of these episodes were not connected to distressing events.

Severe ‘bronchitis’ would still hit regularly several times a year as well as asthma attacks, often so bad I struggled to get any air at all. I was given a rescue inhaler which helped somewhat.

After a divorce and return to a normal social life, I began having painful skin reactions from condoms. From this it finally became clear that latex was the culprit. I began to avoid skin contact with latex and inform doctors.

I went in for a simple outpatient surgery that went horribly wrong and landed me in the hospital for several days. The cause of the trauma was not clear. As I was a young single mother at the time, I did not press charges, thinking that I had waived my right because of the form I had signed.

In the summer of 2003, I went with my new husband to visit his family in DC. While exploring the Capital Mall in 100 degree summer heat, the cork shoes I was wearing made me break out in painful blisters, so we headed back to the house. By the time we got there I could barely walk and hives were beginning to erupt over my whole body. I was worried the new in-laws would think me weak if they saw how sick I was… from shoes of all things. So I hid out in the guest room under the care of my husband, unable to breathe well, nauseated, cramped, and biting back screams just to walk on my swollen, blistered feet to the bathroom. I didn’t know what anaphylaxis was, nor how serious this situation was. However, at least I made the connection that the full body reaction was from the latex binder in the cork.

A few months later I told this story to the surgeon in preparation for a needed procedure. This surgeon advised me that from then on I could no longer tolerate any contact with latex or natural rubber. I was to stay away from any exposure. This knowledgeable doctor scheduled me for a special surgical suite that was latex free.

But I continued to become increasingly asthmatic, and often had incidents where my throat would spasm shut until I drank some water and then I would have difficulties breathing for a while. Initially the reactions I had in restaurants were mistakenly thought to be food allergies, however, I could not duplicate these reactions from the same foods at home. I did not know that many food handlers used latex gloves in restaurants.

I also had erratic reactions to food purchased at stores. For instance, I would react to grapes purchased in one place, but not to those purchased elsewhere. I would react to one chocolate bar, and not to a different brand. Now I realize the reactions were due to latex glove use in handling, or latex glue on the wrapper.

At doctor offices I always advised them of my latex allergy, but if they didn’t see it before entering, they would snap off the latex gloves in front of me and put latex free ones on. I didn’t know that latex could be airborne, so didn’t complain of the practice. I often had tears in my eyes and difficulty breathing. It was attributed to the ‘panic disorder’ or I was asked ‘Why are you sad?’ This angered me, as I knew I was relaxed and happy when I walked into the office. In fact, except for the asthma, my life was great!

It wasn’t until I joined a support group for latex allergy that I learned of anaphylaxis and of the airborne problem. That support group is the NRLALivingRoom yahoo group, full of experienced and caring people. At first, when I heard their stories and issues, I thought they were over reacting. I didn’t see how latex could cause all the problems they talked about. 8 years later, I have all of their issues and more, and suffer the same disbelieving looks of family and friends.

When we moved to California, a friend who also has latex allergy referred me to an allergist who was a specialist in this field. He took a thorough history of my medical procedures, reactions, and other aspects of my life. He then did many allergy tests, including blood tests for latex allergy. Skin testing for latex allergy is not advised by the FDA because it can cause anaphylactic shock. My blood tests for latex sensitivity came back negative. This was very peculiar! I thought I might be wrong about what was happening.

However, this allergist told me something very surprising. Latex allergy has a very high incidence of test results that come back as false negatives! He also told me that currently there are NO reliable tests for latex in the USA. From there he advised me that my history showed a distinct correlation to reactions caused by latex allergy. He advised me that I had a zero tolerance for latex in ANY form, ordered me to carry an Epi Pen, an albuterol rescue inhaler and a strong antihistamine at all times. He also advised me to wear a completely enclosed NIOSH mask rated to filter out airborne latex particles. My allergist wrote a letter to my Doctor advising him of this and included protocols for latex free environments.

In the support group I met many latex allergic folk who also tested negative. Many of these were even more reactive than I was. Recent research shows that these tests have a record of false negatives at a rate of about 1 out of every 4!

Many of the labs and hospitals in this area persist in using powdered latex gloves. Fortunately, the ER nearest me is now latex safe, and a new facility has been built with latex safe lab and radiology departments.

However, when I am away from this area and have an anaphylaxis I can’t call 911 or go to the ER, because of latex gloves used in the ambulances and in the local hospitals. So I have my husband sit with me with one hand on the epi-pen and the other on the phone, while I fight to get air through the swollen airways. I tell him to call if the airway closes completely and I am no longer breathing.

My life has become a nightmare. Even though now I know what is causing my reactions, the years of repeated and untreated anaphylaxis have left me so hypersensitive that I will react to a balloon more than a block away from the latex sloughed off. I cannot enter any building or office where latex is used without an industrial mask rated for lead contamination. If there is a lot of it, as is the case where powdered latex gloves are in use, I cannot enter even with my mask as my eyes and skin will absorb the airborne latex. I would love to attend charity and political events, but the balloons everywhere make it unthinkable. I drive with the air on recirculate, because if I drive past any display of balloons, such as at car lots, I will react as it enters the vent. I keep my epi pen out and available and have had to pull over and use it too many times to remember, just so I will be able to breathe and stay conscious long enough to get home, or get to the closest hospital.

But that’s still not the whole story. There are over 40,000 everyday, medical, and industrial products made with natural rubber latex. Some are more likely to cause a reaction than others, but we who are allergic try to avoid as many of them as we can. When we miss something, maybe a rubber band in an office, we will react to it, and often with life threatening consequences.

When I tell this to people, there is an automatic response that suggests that it’s in my head, that I react because I see something I might react to. No, unfortunately, that is not the case. I react, THEN I look around for what is causing the reaction. It happens whether I see it or not. These reactions to airborne latex often send me to the ER by ambulance.

Just to make things more fun, natural rubber latex from the para rubber tree (hevea brasiliensis) has a peculiarly similar protein structure to many foods. There are over 100 allergenic proteins in the latex milk of the hevea tree, and each one of those has its own set of cross allergens. This creates a very confusing scenario for us. More than half of latex allergic persons will to at least one cross allergen, and often five or more. Me? Thirty seven. Yup. That’s right, 37 foods cause me allergic reactions now that I did not react to less than a decade ago. Trying to eat a balanced diet just became a whole lot more difficult.

Several years ago, I started another support group on Facebook called ‘No Latex’. This has become a tremendous resource for me, as there was an option to add files. So each member pitched in and built a library of facts, studies, tips, personal stories, and useful websites as each of us tried to find strategies to somehow live with this devastating and life changing immune disease and cope with the daily stresses it presents.

All my life I have traveled. I have lived on 4 continents and 5 countries. I have visited a dozen more, and have traveled all over the US. Now traveling is an extremely high risk activity. I have to verify everything, from the airport on each leg, the airline and specific aircraft, the hotels, the restaurants, the locations, the closest latex free ER, the first responders and ambulances… Even then it is not enough. A wedding in the hotel can bring in balloon bouquets, parties come into restaurants with balloons tied to gifts, children walk down the street with balloons…

Sadly, most medical personnel still do not understand that latex is airborne, so they do not believe us when we say we are reacting to the latex residue perhaps leaking in from another area of the hospital where latex gloves are used or to the residue on their clothes from using latex on another patient. During one of my trips out of town, I ended up yet again in an ambulance on the way to the ER. As I got off the gurney to transfer to the ER bed I stood close to the nurse for only a second before my lungs spasmed shut. As I gasped for the air that would not come, trying to make some crazy sign language I hoped would be understood as an epi, she just stood there with her arms crossed. As soon as I stepped back towards the bed, my lungs relaxed enough to get a little air again. She casually asked me if I was having an anxiety attack!

This may all sound crazy. How can a life threatening reaction occur from such remote and miniscule amounts of latex? According to the MSDS posted for Exam Grade Latex Gloves, “FDA views that an extractable protein content of 50 micrograms per gram of glove is sufficiently low enough to cause anaphylactic shock.” Just 50 micrograms. That is smaller than a speck of dust, or a single fleck of pollen floating through the air.

Yeah. It’s that bad.