Bulgaria: Ana Stoyanova

Health experience related to: lupus; multidrug-resistant tuberculosis

Timely detection and management of comorbidities improves health outcomes, while making patients aware of available peer support services significantly improves their experience of care.

In 2000 I was diagnosed with systemic lupus and later on that year with renal tuberculosis (TB). I was very lucky to have a general practitioner who caught the lupus symptoms almost immediately. We didn't know about the TB yet and, at that time, only treated the lupus. My clinical results were very bad; so the doctors investigated further what could be wrong with me and that's how they found the TB.

I had a combination of diseases with very difficult treatments that are mutually exclusive. Basically the lupus treatment induces the TB and the TB medications exacerbate the lupus. About 2 years into my treatment, I had to take high doses of steroids in order to control the lupus, which caused the TB to be multiresistant to almost all of the drugs.

The doctors who were treating me were worried how it would turn out because they don't usually have patients like me. Anything that would come up, I could call them and they would respond. They were very interested in my case.

For the lupus I have easy access to the nephrology specialist, and she is ready to admit me at any time if the disease worsens. I trust her and the team of doctors around her. If I have problems, I would go to her and she would direct me to someone who she believes would be the best choice.

In terms of curing my symptoms and getting my clinical test results in the normal range, I think the professionals were just amazing. They were very responsive and empathetic. But there was little help in terms of the psychological aspects. When you are 20 years old and hit with a lifelong disease that is debilitating, you need a place to go for information where the doctors would sit with you to explain how your life would be. Most of the information I got was from the internet.

What I was missing and what I needed then was a support group, although we patients did provide support to one another within the clinic. But what could have made my health care better is having a formal support system that would offer psychological help. We needed to have some place to go and express our fears of how life would go on.

The one extraordinary thing my doctor did for me was she called someone who had been her patient for 30 years to come and talk to me, so that I can see that you can live with this disease. It's not a death sentence, and you don't have to stay locked in one room for the rest of your life. I appreciated it very much.

The one medication that did not worsen my TB and helped my lupus at the same time was extremely expensive. And I had to pay for it by myself. I still have to pay for it, although now it is a little bit less expensive. But it's not free and it's not covered by any plan. In 2004 I wrote to the Ministry of Health to ask them if they could issue it for free, because it was very necessary for me and it was life-saving. The Ministry said they could not do this, because the medication was not on the list of approved medications for lupus patients.

Despite all this, I have been lucky to find these professionals to take care of me. I have been in remission for the lupus for the past year or so. I haven't had TB since 2005 and all is well.