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How Cincinnati Children’s Is Diagnosing HLH

Writing Diagnosis With Chalk On A Blackboard.

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.

How a Bone Marrow Transplant Saved William

Immune System Background ConceptWhen William was three years old, he was admitted to Cincinnati Children’s with symptoms that, at first, pointed toward leukemia.  His liver was close to failure, his overall health was deteriorating, and within one week of being admitted, he had endured almost a dozen blood transfusions.  Testing would soon reveal that William had fallen victim to Hemophagocytic Lymphohistiocytosis or HLH.

HLH is described as a disease of the immune system, where your body continues to send infection-fighting cells, even after the initial threat has been taken care of.  This causes your own body to begin destroying its good cells, eventually leading to organ shut down.  This is why William’s liver was in such distress.

Once William was diagnosed, his family began meeting with his 15 person care team.  This team was comprised of the HLH specialists at Cincinnati Children’s, along with his pediatrician.  According to William’s father Dennis, “I’m a numbers guy, and I asked them to tell us straight. On a scale from one to 10 — one he’s healthy and 10 he’ll die — what are William’s chances? They said 9.5.  The room went silent. Then we just started crying. It felt like someone just ripped the core right out of us and there was nothing we could do about it.”

It was soon determined that William would need a bone marrow transplant to survive, and so the task of finding a matching donor began.  To his family’s surprise, William’s older brother Charles turned out to be a match.  Charles’ donation would soon save his little brother’s life.

William and Charles had their surgeries in April of 2008 and both recovered very quickly.  In fact, Charles was able to return to school three days after his surgery and William was released from Cincinnati Children’s only two weeks after the procedure.  William is now cured of HLH and will continue to carry-on a normal life thanks to the special care he received during that very scary time.

Less than fifty years ago, in 1968, the first bone marrow transplant was performed.  This life-saving treatment is now, although still fairly new, a very successful option when treating patients with Hemophagocytic Lymphohistiocytosis or HLH.  Most patient transplants are performed with marrow from adult donors because having a sibling match only happens in one out of four cases.  Either way, this serious surgery is currently providing the means to a cure for HLH patients just like William.

William was blessed to have had a donor in his brother Charles.  As stated above, most patients aren’t so lucky.  To ensure all children with HLH are diagnosed and successfully treated for their disease, more research is needed on this newly discovered disorder.  That’s where organizations like the Matthew and Andrew Akin Foundation step in.

At the Matthew and Andrew Akin Foundation, volunteers are looking to help support those facing HLH by supporting the research, clinical care, education, and family support services provided by Cincinnati Children’s Hospital’s HLH Center of Excellence.  Cincinnati Children’s is the only hospital in the United States where HLH patients can find state-of-the-art, cutting-edge care for this disease.  There they will find a team of HLH Specialists devoted to providing the life-saving treatment they so desperately need to survive.

You can help support the HLH Center of Excellence at Cincinnati Children’s by taking part in the many events organized by the Matthew and Andrew Akin Foundation, or by simply donating to their cause.  Additionally, you can support the family of those facing an HLH diagnosis by recommending the specialists at Cincinnati Children’s.  Together, organizations like the Akin Foundation and Cincinnati Children’s will continue to save lives with better solutions for the diagnosis and treatment of HLH.

How Can You Support Cincinnati Children’s HLH Center of Excellence?

low angle of cyclist The stories of survival that come out of Cincinnati Children’s HLH Center of Excellence are amazing, uplifting, and give hope to those fighting this terrible disease.  They are a true testament to the dedication given by every person on the HLH team.  It’s awesome to know that you too can partner with this extraordinary team by supporting organizations like the Matthew and Andrew Akin Foundation and their 700 Miles to Hope bike ride.

Matthew and Andrew’s 700 Miles to Hope bike ride directly supports the efforts being made at Cincinnati Children’s.  These efforts are aimed at raising awareness and performing the research needed to find better treatments that can cure patients with HLH.  The next ride is scheduled to take place on October 4th – October 10th, 2014.  Riders consist of those directly affected by this disease, including individuals who have been cured of HLH due to the efforts being made at Cincinnati Children’s.

Sean Feltoe is one of those individuals.  In 2008, Sean was a very sick 18-year old.  What first seemed like a severe case of the flu was soon diagnosed as Hemophagocytic Lymphohistiocytosis or HLH.  After being referred to Cincinnati Children’s, Sean received the life-saving gift he so desperately needed, a bone marrow transplant from a donor in California.

Today, Sean is a healthy young-adult who has a passion for raising awareness around the disease that almost took his life.  Sean, along with his mom, have started a fundraiser event aimed at building awareness surrounding HLH.  This fundraiser has now become an annual event that raises thousands of dollars for Cincinnati Children’s. Sean and his mom were also involved in the efforts that eventually made September 14th Histiocytosis Day in their home town of Toronto.

Increasing HLH Awareness

HLH or Hemophagocytic Lymphohistiocytosis is a little-known disease that affects around 1 in every one million children.  It is crucial that more physicians become aware of its symptoms and learn to diagnose this disease in a timely manner.  In order to create more understanding around HLH, the HLH Center of Excellence at Cincinnati Children’s Hospital participates in, and funds, a number of educational initiatives aimed at reaching a large audience.  The key components of these initiatives include:  Professional Lectures; Articles Published in Professional Journals; and the HLH Conference held at Cincinnati Children’s Hospital for both physicians and families.

The HLH Center of Excellence at Cincinnati Children’s is also focused on recruiting and training individuals who will be on the front-line of the HLH battle over the coming years.  This next-generation of physicians and researchers is vital in the continued efforts surrounding the treatment of HLH.  To get the physicians and researchers they will need, Cincinnati Children’s is committed to encouraging fellows to focus on HLH research, providing educational sessions at professional society meetings, and competitively recruiting fellows.

For more information on how you can help support Cincinnati Children’s in their efforts to diagnose and treat HLH or on 700 Miles to Hope, please visit www.matthewandandrew.org.