Zoran says: “Many sick people wouldn’t be able to survive without plasma-derived medicine. Simon wouldn’t be able to live without SCIG. He would surely get infected somehow and that would have devastating consequences. And that’s why it’s important to raise awareness: if you donate plasma, you’re essentially saving lives.”
Simon had his first serious infection when he was eight months old. He had inflammation in his blood and it was difficult for his body to cope. At first, he was treated with antibiotics and was in the hospital for almost two weeks. Simon had an extremely severe infection when he was 11 months old. He had a sudden fever and his joints were inflamed. He couldn’t move. Simon screamed whenever he was touched, which was very stressful for his parents. Simon spent 15 days in hospital. Multiple examinations were performed to ascertain the cause, and one of the doctors suspected that Simon’s infection had something to do with his immune system. Simon was diagnosed with a rare genetic disorder – X-linked agammaglobulinemia (XLA), also known as Bruton’s Agammaglobulinemia. The white blood cell formation process does not generate mature B cells, which manifests in a complete lack of gamma globulins, including antibodies which are needed to defend the body against infection.
The diagnosis was a relief for Simon’s parents because they now knew he had an immunodeficiency which, although not curable, was treatable with immunoglobulin products derived from human plasma.
The diagnosis was not the end of the family’s struggles. Being very young, Simon’s baby fat made it extremely hard to locate the veins to insert an intravenous drip for the immunoglobulin treatment. His mother, Verena, recalls: “Simon screamed really loudly as if he were being tortured. The doctors were drenched in sweat. I had to hold him down. The whole process was a real horror for everybody.”
Simon’s parents were happy to find out that they could soon begin treatment at home with SCIG and administer it subcutaneously.
Zoran remembers when the doctors explained how the medication is produced: “When we realised that hundreds of donors were required for the amount of medicine our baby needed, we were absolutely astonished. It was shocking to learn how many people have to donate plasma in order to take care of one sick baby. We were also – to be perfectly honest – a little bit scared to think that so many donors were needed just to produce the amount that is essential for our son.
“I’m healthy so I decided to donate plasma myself. When I first started to donate, I tried to go every week. However, it was pretty far to the plasma centre and I had to set aside a lot of time, so I stopped for a while. But last year, while reading the local paper, I saw that an Octapharma plasma donation centre had opened in BerlinSpandau, very near to our home. I thought, man that is great! I started donating again in January 2017.
“I donate plasma once a week and dedicate an hour and a half to that in my schedule. After I get home from work, I cycle to the plasma centre. I sign in and complete the survey whichyou need to fill in every time you attend the centre. Then my blood pressure is checked, they take my temperature and I’m weighed. If you are given the green light by the doctor, you go to the plasma collection area to donate. Once you’re connected to the plasmapheresis machine, you get a jab in the arm, and then that’s it. You’re able to read a book, listen to music or just relax.
We were absolutely astonished when we realised that hundreds of donors were required for the amount of medicine our baby needed.
“From the very first moment when you register everything is well explained and you are always treated extremely well. There are always enough people around to help and you’re in good hands and feel very secure. The atmosphere is really great. “I am happy to be giving something that will help others. And you don’t have to do much. You only have to endure a small needle prick and give up a bit of your time. Every now and then, the thought will occur to me: ‘My son is now receiving a medicine that so many people made possible through their plasma donations.’ That’s a really
Simon’s parents want to encourage others to donate plasma because they know what it’s like to depend on life saving plasma-derived products. Verena says: “it’s important that more people donate plasma, because the drugs that are made from it are critical for many people. For Simon, this is definitely the case, and it’s so important that these medicines are always available. I’ve heard that there are more and more medical conditions that are being treated with this kind of medication. The demand is increasing and that’s why the number of donors needs to increase as well.”