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Posts tagged disease

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.

Education Resources Related to HLH

Keep-educating-yourselfFacing an HLH diagnosis is a scary, life changing experience, but parents need to understand that they are not alone. There are a number of valuable resources that focus on assisting the patients and families of those fighting HLH.  A few of these resources include those provided by the Matthew and Andrew Akin Foundation and the HLH Center of Excellence at Cincinnati Children’s Hospital.

Both of these organizations are focused on providing top-notch attention and care to those fighting HLH via educational resources, emotional support, and awareness campaigns.  In fact, the Matthew and Andrew Akin Foundation supports and refers families directly to the world-class team at Cincinnati Children’s on a regular basis.  This combined teamwork is making HLH less of a stigma, and in turn is providing a brighter outlook for many children with HLH.

When you visit www.matthewandandrew.org, you will find a number of helpful resources. Some of these resources include: the story of the Akin family and how the Matthew and Andrew Akin Foundation began; information on the mission surrounding the Akin Foundation; details regarding the 700 Miles to Hope bike ride; facts about HLH; and information about the HLH Center of Excellence at Cincinnati Children’s.

When you visit the HLH Center of Excellence page at www.cincinnatichildrens.org/hlh, you will be given even more resources and information.  Here you will find more detailed information about: research projects currently taking place at the hospital; a family support page with HLH success stories; information about doctors and support staff; and valuable contact details that will put you in touch with the Cincinnati Children’s team.

There are additionally many more resources that you may find helpful during this battle.  Make sure to take a look at the following webpages:

  • www.histio.org – The Histiocytosis Association of America is the only organization in America whose sole purpose is to serve the needs of those facing a histiocytic disorder.
  • www.marrow.org – The National Marrow Donor Program is dedicated to providing the chance for all patients to get the bone marrow or umbilical cord transplant they need.
  • www.kidshopechest.com –  At Kids Hope Chest you’ll find all of the products needed to assist your child in staying away from germs in and out of the hospital.
  • www.hlhsupport.org – HLH Support is an organization aimed at helping patients and families in understanding and coping with HLH.
  • http://www.marrow.org/GIVING/Hendrick_Marrow_Program/index.html – The Hendrick Marrow Program raises money that is used to help get more people on the National Marrow Donor Program’s Be The Match Registry.
  • www.redcross.org – The American Red Cross exists to provide compassionate care to those in need.

If your child is facing a diagnosis of Hemophagocytic lymphohistiocytosis or HLH, educating yourself is great way to feel more secure in your ability to beat the disease. Understanding what HLH is about and how your child will be treated will bring you hope, awareness, and strength during a very difficult situation.  Take the time to explore the resources listed here and make sure to share the information with other members of your family.

At the Matthew and Andrew Akin Foundation, volunteers focus on two main goals.  These goals include supporting the work being accomplished by the experts at the HLH Center of Excellence at Cincinnati Children’s Hospital and to give back to the organizations that so graciously supported the Akin family during their personal HLH battle.  Please consider referring these resources to other families facing an HLH diagnosis by contacting the foundation via phone or email.

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.