Living with an unknown rare disease

Patricia de Klerk (40) suffers from Takayasu burn arteritis, a systemic inflammatory disease characterized by damage to the large and medium-sized arteries and their branches.

As a result of this, she was fired from her job at a local clinic due to her deteriorating health, which was accompanied by frequent visits to healthcare institutions.

“It all started in 1998, when I was in ninth grade and had symptoms of chest and neck pain, dizziness and vision changes, which led me to visit a local clinic,” De Klerk recalls.

A week and a half ago, he went for a follow-up and during that, doctors noticed inflammation in his vein, which means the Takayasu is active.

“The type of medication I was taking caused a lot of infections, so they put me on new medications. I had the flu and they decided to hospitalize me due to the inflammation and side effects. Now I’m taking a new medication because they took me off the rest, that’s what happened in the last week and a half,” De Klerk said in a soft voice.

De Klerk is now in Walvis Bay, where the weather is favorable compared to Rehoboth, which is sometimes dusty and unbearable.

“The difficulty breathing, if I take a shower and start wearing clothes, I get that. I can’t walk for long because arteritis starts. The other day I had an x-ray for lower back pain. I’m told the arteritis has started to eat away at some of the cushions in the spine, but in the lower back, meaning the bones are pressing against each other. That’s where the pain comes from, so I can’t stand or walk for a long time,” he stated.

De Klerk noted that doctors and health professionals do what they can with what they have, but more resources are needed to care for such rare diseases.

“I’m still learning about this disease; I don’t know much about it. I learn from doctors here and there when doing follow-ups, and they at least try to simplify it so I can fully understand my condition. The only way I have dealt with this is because I have made peace with it. It’s not easy, but I have no other option. “I learn while I live with it,” he indicated.

The American Autoimmune Association states that Takayasu arteritis is sometimes called “pulseless disease” because of the difficulty in detecting peripheral pulses that sometimes occur due to vascular narrowing.

The “typical” patient with Takayasu arteritis is a woman under 40 years of age.

“Because Takayasu arteritis can cause heart problems, high blood pressure, and stroke, Takayasu patients should talk to their doctor about ways to reduce the risk of these serious problems,” the association says on its website.

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