I’m 51 yrs old and was diagnosed with Degos disease in August of 1996. 

I noticed a spot on my right thigh in March of 1996, but I didn’t really think anything of it. 

Then in May while on a fishing trip with my husband, I noticed another one on my neck and two more on my left leg. 

Being a doctor’s daughter, I thought this was a little out of the ordinary, so I went to my internist (Doctor of Internal Medicine) who insisted it was pigment changes.

I was not comfortable with that, so I asked for a referral to a dermatologist. The dermatologist biopsied one of the lesions on my left leg. A week later, he told me that he could not treat what I had, (he had seen a case like this when he was an intern, some 20 yrs prior) and he was referring me to the Head of Dermatology at the University of Kansas Medical Center. 

The Head of Dermatology told me that I had Degos disease, and not to be frightened. I was not sure what he meant by that comment, so my husband went to the medical library at Kansas University Medical Center and copied everything he could find on it.

Well… if we weren’t taken aback with what we read!!! 

I was taking 650mg of aspirin three times a day and 75 mg of Dipyridamole daily. After being reassessed by the doctor at Kansas University Medical Center.  

The lesions seemed to slow down, and we thought we had it under control.

Then in April of 2000, I had a heart attack right in the Emergency Room at Kansas University Medical Center!!! 

They did not believe I was having a heart attack since I was only 47 years old at the time, and I had no history of heart trouble. 

I kept insisting I was, until I had to prove it by going Code Blue and had to have the paddles used on me twice to revive me. I was then in a coma for 36 hours and woke in the ICU on a breathing machine! I bounced back, and the doctors told me that my right artery had dissected (exploded). 

They did an angioplasty on me and sent me home five days later and told me I could go back to work in two weeks, and see their cardiologist in four weeks.

Well, that didn’t happen, because I was still not feeling right three weeks later.

I went to a different cardiologist for a second opinion, and he put me right in the hospital from the office. I didn’t have time to blink! 

I was back in the Mid America Heart Institute for two weeks, and in that time they did another angiogram and angioplasty and found out that my right artery had not exploded, it had been attacked by my blood cells and had blocked up the artery to the point that now they could not save it.

I lost 10% of my heart muscle and my cardiologist is convinced that it was the Degos disease that caused the MI in the first place. 

He has now consulted with my dermatologist, and they both concur that it was the Degos disease that was at fault.

Now instead of Dipyridamole, they have me on 75 mg of Plavix (blood thinner and clot buster) along with 1950 mg of aspirin a day. 

Lesions show up at intervals of 1-2 every 18 months. 

Since I’m allergic to Trental, there is not much else they can give me. 

I know that most professionals think that Degos disease can hit the small intestine and/or the brain but it can also hit the eyes and heart. I just want everyone to be aware of that.

I’m the type of person that stays “up” for the most part, and I don’t let this thing get to me. I figure I have my life to live, and I’m going to live it. I play golf, bowl, fish, read, and play on my computer. 

I have a wonderful family, and my husband is great! 

I take my meds each day, but other than that reminder, we don’t talk or even think of it. 

I don’t want any of you to think that I’m not concerned or worried. I am, but it takes too much energy to worry 24/7 about something that at this point I can do very little about. 

I would rather have a positive attitude and live a little!! What about you kids??? 🙂

Jane