JFK's Unknown Legacy: an Interview with Jan Bucha, Member of AddisonsDisease.Net

As a young child, John F. Kennedy was a sickly child. As he went into his young adult years, he was finally diagnosed with Addison's disease. WebMD gives this short description of Addison's disease, "In Addison's disease, the adrenal glands don't make enough of a hormone called cortisol, or less often, a related hormone called aldosterone. That's why doctors sometimes call the illness chronic adrenal insufficiency, or hypocortisolism."

Since Kennedy's assassination in 1963 predictions about what his life would have given the world has been enormous. The question often is asked if Kennedy could have even been elected president in this day of YouTube and transparency. Most journalists and writers look at his highly publicized personal life as the one aspect of his life that would have made it impossible for his election today.

But, in an essay by Richard Reeves in Character Above All, he answered the question with the following statement. "Could a person of Kennedy's character survive the kind of political climate that now exists? No. There is no way, not so much because of his character, but because of his health. John Kennedy had Addison's disease (a withering of the adrenal glands) which was a terminal disease until maintenance treatment was discovered in 1940.

That year, before Kennedy knew he had the illness, a British doctor discovered it could be treated with cortisone, which would replace adrenaline." "The cortisone was extremely expensive at the beginning, and the Kennedy's kept quantities of the drug in safety deposit boxes around the world."

AddisonsDisease.Net is an online community developed by Telepluxes, Incorporated. Members come together to support each other as they experience the disease. Jan Bucha is a member of the community and agreed to help us all understand the complexities that she faces on a daily basis. She also gives an insiders view of how she came upon the realization that she is afflicted with Addison. Jan also gives JFK credit for helping her realize she had the disease. In the following conversation she discusses JFK, and AddisonsDisease.Net, the online community that saves her life, everyday.

ABS) How did Addison's disease first reveal itself to you? What were your symptoms?

JB) As soon as I stopped my Premarin several years ago, I became symptomatic within a few weeks.. I felt tired and started to have diarrhea on and off. Even after I began eating normally, I still felt sluggish. I also had some muscle aching in my right leg at night. I went to my PCP and my thyroid studies were found to be abnormal. I should mention that I had most of my thyroid removed many years ago.

I went to an endocrinologist. My TSH was high. I began taking thyroid replacement. After getting my TSH within normal limits with meds, I still did not feel quite right. I felt edgy and not handling stress well. A month or so would go by and I would feel fine then the diarrhea would come back and I would begin feeling tired and lethargic. My legs would bother me with the aching along with some back pain with the diarrhea. The diarrhea would be on and off lasting a week or two. I would drink Gatorade, boiled rice and water even Pedialyte and it would finally stop after days of getting hydrated.

I was quite familiar with JFK. I had read many books on him and was quite familiar with his medical history and Addison's disease. I began to wonder if I had his disease. Although, when I read up on Addison's disease, many patients usually have the nausea and vomiting. Some can get diarrhea I had the runs so did JFK. It would wear me out. What I noticed was my tan. It seemed to be a bronze color and lasted much longer than anyone in my family. I also noticed that my appetite was not there like it use to be. I saw my endo and my TSH was normal. I mentioned to him that I thought I had Addison's. I needed more rest than I ever did. I would be fine for a period of time but then the same syndrome would hit again. I would do the best I could around the house but everything was an effort. I told him my colonoscopy was normal in the summer. It was also now late winter and my tan on my back was still there from a trip I took in November. He asked me about nausea and vomiting. I said no I did not have that, but I feel like crap most of the time in the past month. I said can you run the ACTH.

It was very high. I did a 24-hour urine test for cortisol production. I make very little cortisol. I was diagnosed with primary Addison's disease. He put me on 20 mgs. of Cortef. I also was diagnosed with pernicious anemia and need B12 shots monthly. This is an associated disease that some patients with Addison's get.

ABS) How does Addison's disease affect the working life?

JB) Before diagnosis, it can be very difficult going to work. I also know because I have talked to many people on line about their problems. They go from doctor to doctor before they get a diagnosis. Afterwards, it is also difficult because of the job they have. If it involved a great deal of physical activities, they may need to change jobs. Some have changed jobs or they have an understanding boss who works with them and the darn disease. We do get more tired than most people some of the time.

Some with Addison's handle their lives well. They have learned how to the manage the disease. And in all candor some with Addison's are more symptomatic than others for whatever reason. This is especially true if you have asthma, allergies, or another disease along with Addison's. Working is far more difficult for them. Infections, even cavities in the teeth, need to be treated early so problems don't develop.

ABS) Is this the disease that JFK kept hidden from the public?

JB) Yes, this is the disease that JFK kept hidden from the public. I have read so many books regarding JFK and his medical history. It took him so long to be diagnosed. He had Addison's when he was young. He suffered so much and was at death's door many times because of it. Treatment is far better now than decades ago. However, diagnosis is still difficult. Had I not read so many of his books, I would not have asked my endo to run tests for Addison's. I was pretty darn sure I had the disease. I had discussed it with my PCP and then went to see my endo. They both were surprised how accurate I was.

I owe it to JFK. I have a degree in political science and medical record science and I worked in medicine for years. Many people suffering from Addison's do not have my background so it is much harder for them to even think about Addison's as a possible cause, etiology for their many symptoms. Adrenal insufficiency is also not what physicians think about in relationship to the multiple symptoms we have. Diagnosis of this disease still remains difficult from all the people I have talked to on-line.

ABS) Is Addison's disease genetic?

JB) No one in my family had Addison's. My parents lived well into their 80's. My sister never had it. I can't remember anyone having the syndrome I have experienced. I have talked to people at the Addison' site..some have had family members that they suspect had it as they look back on family histories.

If you look at JFK, I don't believe he had a family member with the disease. He had brothers and sisters who did not have the health issues he experienced. I do believe people I have talked to on line. Some members of their families from what they have posted lead me to believe that some did have Addison's, just never had it diagnosed. I believe it can be genetic from what others have written.

ABS) Is there anything you would like readers to know about Addison's disease or your experience?

JB) One last thing I would like to add is how helpful it has been for me as well as others to belong to the Addison's site with Jerry. We discuss our problems, our illnesses, what meds we are on, what is working and not working. I learned so much from the site. I learned about the problems young people have and children. It is good to know we are not alone especially early on when we are first diagnosed. When you have a rare or uncommon disease, it is so helpful to have others with the same disease and share info. This is so important for others with this disease. Learning to manage the disease is so important; it is primary in leading a normal life.

Jan Bucha found she had Addison Disease late in life. Because she had a medical background and had become extremely familiar with John F. Kennedy's struggles with the disease she was able to recognize the illness. Jan gives full credit to JFK and AddisonsDisease.Net for helping her find her way through the daily struggles she has with this uncommon illness. Perhaps this is one of JFK's greatest unknown legacies.