At Cincinnati Children’s Hospital, the HLH Center of Excellence is committed to getting children diagnosed with hemophagocytic lymphohistiocytosis or HLH as quickly as possible. Unfortunately, this task is often harder than expected due to the fact that HLH can look a lot like a number of other conditions. For this reason, HLH often goes overlooked for some time causing the treatment of an HLH patient to become even more urgent.
The symptoms all doctors and parents should be looking for when evaluating someone for HLH include: persistent fevers, rash, enlarged liver, enlarged spleen, enlarged lymph nodes, anemia, low platelets, low white blood cells, jaundice, hepatitis, liver failure, respiratory issues, seizures, and altered mental functions. Having any number of these conditions does not mean you are dealing with HLH, but understanding that they may point toward HLH is imperative.
To properly diagnose HLH, Cincinnati Children’s Hospital recommends proper blood tests that indicate blood cell counts, liver function numbers, and immune system activation markers including ferritin and soluble IL-2 receptor levels. It is indicated that doctors may also perform additional testing like X-rays, CT scans, ultrasounds, and MRIs so that they can look for infections that can be related to HLH. A patient may even undergo specialized blood tests designed to rapidly screen for the genetic causes of HLH.
Due to the discouraging fact that HLH often gets misdiagnosed or overlooked, it’s so important to continue educating pediatricians and parents to look for this life-threatening disorder. By focusing its efforts on a mission centered on education, the HLH Center of Excellence at Cincinnati Children’s Hospital is getting the word out. Thanks to educational efforts like professional lectures, published articles in professional journals, and the annual HLH conference held at the hospital, Cincinnati Children’s has been able to increase HLH awareness.
Cincinnati Children’s is also focused on increasing HLH awareness via recruiting and training new physicians in this specific area of study. As the next generation of HLH specialists enters the field, the center intends to build a team by encouraging fellows to focus on HLH research, by competitively recruiting, and by supplying educational sessions at professional society meetings. All of these efforts are important to ensuring the continued research and development of the most-effective diagnosis and treatment solutions for those suffering from HLH.
The HLH Center of Excellence also partakes in efforts to raise awareness outside of the medical profession by partnering with advocacy groups like the Matthew and Andrew Akin Foundation. At the Akin Foundation, Matthew and Andrew Akin’s parents work with other volunteers to raise awareness and funds that are used to support HLH research, HLH education, and to support families dealing with an HLH diagnosis. These efforts are backed by a number of fund-raising events including the 700 Miles to Hope bike ride. During this bike ride, participants pledge to travel 700 miles over the course of seven days, all while raising money and awareness for HLH. All donations are then given to the HLH Center of Excellence at Cincinnati Children’s where it is used to support their on-going, HLH-centered mission.
If you are a physician, parent, or friend of someone facing an HLH diagnosis, the Matthew and Andrew Akin Foundation wants you to get in touch with the amazing team of HLH doctors at Cincinnati Children’s. The Akin Family understands how important it is to receive top-notch care when dealing with HLH and they encourage you to do your research. Please feel free to contact the Foundation with your questions or concerns, or to additionally reach out to Cincinnati Children’s directly. Children suffering with HLH are truly one in a million. Get them the love and care they rightly deserve by contacting the specialists at Cincinnati Children’s.