Facing 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.