Help to Allison to travel to Spain looking for a cure of her serious disease

Hi there, my name is Allison Orejuela and I was diagnosed with Focal Segmental Glomerulosclerosis (FSGS) at the age of 21 years old. I arrived in New Zealand as a refugee from Colombia, South America.

In October last year my kidneys began to fail so I had a biopsy done in March this year. Unfortunately, the procedure was carried out in the wrong kidney and another had to be done later on. After the biopsy, I could not walk from the pain but even then I was discharged on the same day.

To help supress the immune system the doctors put me on a daily dose of 60 mg prednisone (steroids) treatment. As a side effect of the medicine I began to experience unusual weight gain which change my body and face.

From the weight gain I developed very painful stretch marks in the armpits, legs, arms, abdomen, back and sides. I also have an allergic reaction around my neck due to the medicine. My skin is very weak and thin, I get bruises very easily and it is horrible when I get blood tests done.

Furthermore, I am always in pain in different parts of my body but probably the worst is the pain is the one I feel in my bones. Most of the pain is located to my legs and back but I am short of breath most of the time. I also experience nausea, vomiting, loss of appetite, chills, cramps, paralyzed fingers, muscle pain, blurred vision. All of these symptoms and more have disable me from living a normal live and working.

In addition to the above, I also have high blood pressure, high cholesterol and diabetes. - These are all side effects of prednisone. Sadly, all the pain and suffering I have experienced have been in vain as the medicine did not work and now my creatinine is the highest it has ever been. According to the doctors, I am idiopathic steroid resistant which means I now need to treated with immunosuppressive agents like cyclosporin but it is not working either. What saddens me the most is that I have to go through all this without hope because the medicines don’t work and my doctors are now waiting for my situation to get worse before they try another treatment.

Currently, I am looking for a different treatment in Spain as one of the best nephrotic hospitals is there. The Vithas Hospital will be able to provide me with rituximab treatment which will be to target the damaged cells affecting my kidneys. With this I hope to ger total or partial remission without steroid treatment as it is one of the best treatments with least side effects.

If treated properly, people with FSGS can recover very fast. I know my kidneys are destroying themselves but it would be amazing if I could have recover and get back to living a normal life. Besides, I am very young and going through dialysis or kidney transplant would likely have ever lasting side effects.

The true is, my condition is getting worse. I currently am on stage three kidney function which means my kidneys are working at 35% their normal rate and worsening. My doctor also does not seem to think I am getting better or the cyclosporine is having any positive effects.

According to my doctor, getting or even importing Rituximab in New Zealand is almost impossible due to the cost of the medicine but it could cure me. My only option now appears to be this Givealittle page to help me travel to Spain and get the treatment necessary.

I now live with my mother and my brothers but due to my situation my mother has to cover the bills at home. Arriving in New Zealand has been a blessing and I have had the opportunity to study and work. I learned how to speak English very fast and spent most of my teenage years studying and learning about businesses, modelling, make up and air hosting.