11503 St. Charles Rock Rd. • Bridgeton • MO • 63044
636-541-2766
IRS 501(c) 3 Tax ID # 27-3427104

Posts tagged treatment

Cincinnati Children’s Is Supporting Families Facing HLH

Parent Holds The Hand Of A Small ChildIt isn’t a secret that the HLH Center of Excellence at Cincinnati Children’s is making a difference in the lives of those facing an HLH diagnosis.  As host to one of the world’s leading HLH programs, Cincinnati Children’s understands the ins-and-outs of this disease unlike most hospitals.  Thanks to this team’s focused attention on HLH, families are finding the many resources they need to improve the outcome for the tiniest of patients.

HLH or Hemophagocytic lymphohistiocytosis is a rare condition that quickly becomes fatal. As this immune disorder begins to attack a patient’s organs, it is imperative that a proper diagnosis is made and that a treatment plan is put into place.  This swift action is the only way doctors can effectively give hope to those fighting this disorder.

Resources to Consider When Choosing Cincinnati Children’s Hospital

There are a number of reasons why the volunteers at the Matthew and Andrew Akin Foundation so highly-recommend the services provided by the HLH Center of Excellence at Cincinnati Children’s Hospital.  Not only does Cincinnati Children’s employ some of the world’s leading HLH doctors and scientists, but they additionally provide extraordinary family support in the form of many other services.  One things for sure, at Cincinnati Children’s you will always feel welcome!

Coming to a new city to receive specialized medical care is a stressful task and the team at Cincinnati Children’s wants to assist you in reducing that stress.  This is so important because all of your attention needs to be focused on your sick child and not the ins-and-outs of visiting an unfamiliar city.  In order to do this, Cincinnati Children’s partners with a number of local service providers so that arranging lodging and transportation is much easier.  Out-of-town families even have access to complimentary and discounted tickets to some of Cincinnati’s most popular attractions.  What a fun way to relax and just enjoy your child!

Before coming to Cincinnati Children’s, you will want to make sure and check out the Family Support page accessed via the HLH Center of Excellence home page at www.cincinnatichildrens.org.  The Family Support page is filled with uplifting HLH Success Stories that will help you understand the loving care you can expect from this team.  While browsing the hospital’s online resources, you will additionally find an abundance of information about the disease, an overview of what treatment looks like, and details on current research projects hosted by the hospital.

More on the Matthew and Andrew Akin Foundation

The volunteers at the Matthew and Andrew Akin Foundation want to encourage you to consider the HLH Center of Excellence at Cincinnati Children’s.  Through personal experience, these individuals understand what HLH patients are facing and strive to connect them with the best possible care.  For more information about Cincinnati Children’s, we invite you to click on the “Why Cincinnati Children’s” link provided above.  There you will be re-directed to the HLH Center of Excellence home page.

For more information regarding how you can help support those fighting HLH, make sure to visit www.matthewandandrew.org. This site has been designed to give HLH families the important information they need to be connected to the HLH specialists at Cincinnati Children’s.  By spreading the word, funding research, and focusing on education, the Matthew and Andrew Foundation is finding ways to HLH less scary and more treatable.

Coping With An HLH Diagnosis

Friends Holding HandsAll families dealing with an HLH diagnosis will experience a range of emotions as they begin to process the full spectrum of what their young patient will face.  On an individual basis, it should be expected that each family member will have their own personal reaction, as well as an individualized set of ways in which they will process and cope during this time.  No one way of dealing with the situation is right or wrong and it should be stressed that everyone’s emotions are perfectly normal, expected, and should be treated in a respectful manner.

To begin to understand what this process will look like, it’s usually best to reference what is called the grief-cycle.  This cycle of emotions includes – denial, anger, depression, and fear.  These emotions are all perfectly normal for those facing a rare-disease diagnosis due to the tremendous amount of stress involved.  It is also important to remember that all individuals will experience “good days and bad days.” Encourage those going through these ups and downs by reminding them that they will find relief with the passing of time.

As a part of the coping process, each member of your family will begin to understand how they best deal with the situation and will thus find their preferred coping method.  Some of these methods of coping may include: finding social support; partaking in individual counseling or therapy; becoming educated on the disease; and/or acting as an advocate for the patient.

For those who are looking to social support, it is important to remember that asking for help is okay and that graciously taking any help offered to you is okay also.  You will additionally want to connect to your significant other or to another important person in your life by communicating daily.  Even if you only have a few minutes to talk, those daily moments will keep help you to stay connected and provide a sense of normalcy to your life.

Individual counseling or therapy is another effective way to communicate your feelings with someone who can support you in working through them.  Ask your child’s heath care provider, or other parents, for a recommendation.

Educating yourself about the disease your loved one is fighting will help you to understand the situation they are facing in a whole new way.  Education is often a way for individuals to feel like they have more control over a situation.  This is because it allows them the chance to know more about what the patient will experience as they undergo treatment for their disease.

Finally, becoming someone’s advocate is a great way to get involved and make a difference.  As a part of this process you’ll need to do some research, ask questions, and develop relationships with the medical professionals around you.  This type of support is crucial and everyone around you will benefit from your belief in the patient’s full recovery.

If you are a family facing an HLH diagnosis, don’t feel like you are alone.  The volunteers at the Matthew and Andrew Akin Foundation want to connect you with the support you need to make informed decisions while fighting this disease.  We encourage you to explore the services provided at www.matthewandandrew.org, as well as those provided by the HLH Center of Excellence at Cincinnati Children’s Hospital.

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.