SURVEY: What do we want health practitioners to know?

[Guest guest]

1. That waiting in their offices for lengthy periods is difficult, perhaps we

can wait outside or a non distrubing room (unlikely to be void of last patients

smells, no latex gloves, no carpeting, no fragrances)

2. That what you cannot seesmell, doesnt mean it doesn't exist and isnt poison

to someone esle

3. That their aftershave, laundry det residue, dryer sheet use, is potent and

detectable by us and adding to our adverse reactions of post nasal drip, dry

mouth and throat and lung burn.

4. That many of us cant/dont see doctors as we are squirreled away in fields

etc, trying to cope with the toxic world in which they operate....so ...there

are many more people wtih this than they could know.

5. That the very drugs they are used to using are not appropriate and actually

perpetucate the symptoms we should be addressing. They need to think

" differently " about treatment, and understand and support avoidance.

6. That we need their help in dealing with our workplaces, so that they can be

supportive in aquiring felxible accomodations and understanding from employers

who may have not been exposed before to this sort of disability.

7. That they read up on the illness which spans more than 30 documentabel years

now. Speak to other professionals who are experiencing patients with this

illness. Gaining knowledge about EI. will combat ignorance and denial.

8. Read about the toxins in everyday products, and post signs in

offices.... " Did you know that dryer sheets contain.....and may agrivate...... "

9. Contact CDC or EPA to support indoor air quality regs. They need to be

proactive in prevention.