Friday, July 31, 2009

CF Disability Disclosure Letter- the formal one

Some of my bloggies emailed and said, (paraphrasing them all together in a lump), "Hey, CG, that was a great email you sent to your long-time colleague about your recent health changes. How do you word it when you write a letter or email at a new job?"

These inquiries made me think that I could help some bloggies out and just post my version of a a formal disclosure letter. This is the letter that I give to my new bosses, AFTER I have started work, but BEFORE anything could come up related to my health that could require an accommodation.

This window of time is smaller than most people assume that it is. Any person, of course, could find himself in a health-related emergency shortly after starting a new job. A person with CF, however, is at a much higher risk of facing a health-related emergency or a need for accommodation shortly after starting a new job. You don't want to wake up two weeks into a new job (a stressful time, might I add) and realize you have spiked a fever and BOOM! You're out for just 4 or 5 days, at home, sick, and worrying about giving a bad impression to boot! No need for it.

It is better to communicate early on in the work relationship, so that minor accommodations can be made to protect your health without seeming like a nagging new employee. Major changes in your physical health can be discussed if they arise, without the added stress of having the initial conversations about CF in general.

In any event, it is always important to protect your employment rights in disclosing your health information. You should allow yourself time to craft a letter carefully and honestly, and consult with resources on disability and labor law, to guide your sweet verbage.

Here is my letter. Feel free to use any wording from it in your own private letters. (But don't repost or publish). Thanks!



111 Cystic Street, Fibrosis, STATE 12345-1234

123.456.7891 (Cell) /

Aug. 1, 2009

Place That Hired You, Awesome Institution
Awesome Road.
City, State 12345-2345

ATTN: HR Personnel; Health-Related Personnel; your direct supervisor; any person you want to tell.

Dear Colleagues:

I am writing to inform you of a medical condition I have that may affect my employment. I have Cystic Fibrosis, a genetic disease affecting primarily the respiratory and digestive systems. Having dealt with Cystic Fibrosis since birth, informing school teachers, college professors, employers and colleagues, I am very comfortable talking about it and its affect on my life and employment. I have also found it helpful to provide a little background information on Cystic Fibrosis in order to contextualize our conversation:

What Is Cystic Fibrosis?

*from, The Cystic Fibrosis Foundation. (2006)

Cystic fibrosis (CF) is a genetic disease affecting approximately 30,000 children and adults in the U.S. A defective gene causes stress to primarily the respiratory and digestive systems of the body. People with CF have a variety of symptoms including: persistent coughing, wheezing or shortness of breath; and an excessive appetite but poor weight gain. Symptoms vary from person to person due, in part, to the more than 1,000 mutations of the CF gene. The treatment of CF depends upon the stage of the disease and the organs involved. Adults, however, may experience additional health challenges including CF-related diabetes. [. . . ]

It is important to note that though the symptoms of CF present as respiratory illness, no aspect of CF is contagious.

Cystic Fibrosis is recognized by the Americans with Disabilities Act and I may, at a future date, request accommodations which would allow me to better complete the vital functions of my job. However, at this time I do not need accommodations in my employment. If you have any concerns, please do not hesitate to contact me directly. There are a myriad of healthful resources online, one in particular titled [GIVE THEM A LINK TO MORE USEFUL INFORMATION THAT PERTAINS TO YOUR JOB, IF AVAILABLE]. This online document provides some helpful information specific to our workplace.

For the protection of my own privacy, I ask that you not share this information with other employees without speaking to me. Thank you!


Cystic Gal

[Sometimes I include a statement here asking them not to include health-related records in my HR file, and not to create electronic copies of this disclosure. This is up to you. I don't want my CF disclosure to be inadvertently emailed or faxed to a new potential employer ten years from now, when they check references. This would also depend on your line of work and industry.]


I hope this helps! Let me know if you have any questions.

In other news! My morning routine went great. I walked at 2.8mph for 20 mins and ran for 30 seconds with the O2 cannula in my mouth. Highly successful! More minutes, more running, tomorrow a.m. On eating, I did not successfully eat breakfast. I was nauseous and tried to eat and it did not work out (that's all I'll say). BUT I was wicked hungry about 9:00 AM which is earlier than I usually eat, so my overall calorie intake today had to be higher. I ate earlier and thus, more often. I don't stop after I start :)


  1. Crazy awesome sweet disclosure letter! Also, good job on eating more today...I'm so proud of you!


  2. I had this happen to me at a job. I started the first week of January and before the month was out I landed in the hospital for
    2+ weeks(spiking 101-102+ degree fevers, elevated LFT's and other issues). I had not had a chance to let anyone know I had CF. I like the idea of the letter, although I have never told an employer about CF until I had to(when I was about to be admitted in most cases).


  3. Thanks for sharing!! My husband has just started disclosing CF to people, so this may come in handy for us in the future.


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