Written by Brian and Haley Welch
Meet Brian. He’s a 65-year-old from Epsom Surrey, UK. He has a wife and three sons. He’s dealt with autoimmune neutropenia (AIN) from a very young age.
He first noticed something different about himself when he was young – he got infections every time he would cut or graze himself. He remembers that his dad used to put a hot poultice on them for a while, cut the wound with a razor blade he’d boiled, squeeze the poison out, and put a plaster or bandage with Germolene on it to clean it. The technique worked for the time being; the wound would always clear up, so Brian never had to go to the hospital.
However, Brian’s infections persisted into adulthood. As he grew up and broke into the world of work, he began to get mouth ulcers in addition to his normal infections. During a dental appointment in his thirties, his dentist found one that was alarmingly large inside his bottom gum. The dentist told Brian that he may have a blood disorder. This was the first time Brian was told that he needed to seek medical advice.
Brian’s general practitioner sent him to his local hospital for blood tests. When his results came back, he was told to go to the hospital so that he could go through them with a hematologist. They also told him to bring his wife. He prepared for the worst.
When Brian and his wife arrived at the hematologist’s office, the doctor greeted them. She appeared grim, which only heightened Brian’s anxiety. After exchanging formalities and chatting a bit about blood tests, she told him that he had leukemia. She informed Brian that he had a very rough time ahead of him with chemotherapy and a horde of other tests, but attempted to give him a glimmer of hope by assuring him that there was a chance for a cure since they had caught it early enough.
Brian and his wife left the hospital stunned, wondering how they were going to carry this heavy load. Neither Brian nor his wife knew what to say or do.
Until the next day.
The hospital called Brian in the morning and asked that he come back immediately to talk to the doctor. Even though the diagnosis was already awful, Brian and his wife prepared for something even worse.
They arrived together and went straight to the office where they were given heavy news just 24 hours prior. The doctor greeted them again, this time looking worried instead of grim. She broke the news.
She told Brian she had made a mistake in his diagnosis. He didn’t have leukemia. Instead, she told him that he had autoimmune neutropenia. Being a very rare illness, she didn’t expect Brian to know what this meant, so she explained the condition. Brian was actually relieved to find out that the battle he needed to fight was a totally different battle than that of leukemia.
Brian began an entourage of blood tests. They consistently showed that his neutrophil levels were low. A bone marrow biopsy revealed that his body was producing neutrophils, but they were not maturing. Furthermore, the antibodies in his blood were attacking the very few he had.
Today, Brian has regular blood tests at his local hospital. His hematologist, Dr. Lydia Jones, sees him every three to four months and more frequently if he has a problem. He keeps antibiotics and G CSF injections at home if he needs them.
He shares that Dr. Jones has been fantastic to work with. She’s always caring and helpful with Brian and his rare condition.
Brian’s journey with neutropenia is ongoing, but it’s not as unpredictable anymore. He gets fatigued sometimes, but he knows he needs plenty of rest, especially when he gets a cold or infection. And he has a tried-and-true formula: he cooks his food well, exercises often, washes his hands frequently, and avoids crowded places when he can – even when it means staying away from football matches, concerts, or popular pubs.
Brian’s travel is also limited because of neutropenia. He doesn’t go to places where he’s required to get an injection in order to travel to, which narrows the list of places he can visit. It hurts him to not be able to travel with his loved ones. Because of this, he understandably feels like he’s missing out on what life has to offer.
Neutropenia is not easy on Brian. Injections come at a cost. He gets bad bone pain, suffers fatigue, and needs to rest in bed for several days post-injection. He’s had to return to the hospital for a few nights in a row because of a few bad infections. He has even had to pass painful kidney stones throughout his life. This year, though, he’s felt good. He hasn’t yet had any colds to deal with.
Fortunately, Brian works for himself, so he doesn’t need to explain his condition to many people in the workplace. There are only two other people in his office, and they are both empathetic towards Brian and what he goes through. However, it’s still hard to explain to someone who’s never heard of the disease. He shares that it truly is a mission to get people to understand what he goes through. He focuses his energy on those who have an open mind and want to learn about neutropenia.
His loved ones are very conscious of how they interact with him. When anyone in his family has a cold or otherwise contagious infection, they are sure to keep their distance so they don’t make him sick. They know that while the cold may be easy for them to tackle, it has a whole different implication for someone with AIN.
Brian often wonders how he will cope with neutropenia as he ages, but he reminds himself that he is in control of the neutropenia and not the other way around.
Brian has some final words of wisdom for anyone reading his story who has been diagnosed with AIN:
“Keep your hygiene on a high level, be prepared with medication at home, stay away from busy places as much as you can, and talk to your loved ones on how you are feeling. There is no reason you can’t have a happy and active life with AIN. You will have off days, but you just have to stay strong and try to see the positive things and try not to dwell on the negatives. You’re not alone, you’re not abnormal, and you’re not weird. You are just different, and being different is not always a bad thing. It’s hard work at times, but not bad. Good luck to all you wonderful people out there with this very complicated and confusing condition.”