- What is the National Neutropenia Network?
The National Neutropenia Network (NNN) is a non-profit organization based in Michigan that was started in 1994 to support neutropenia patients and their loved ones. Neutropenia is a very rare blood condition in which there are too few white blood cells in the blood, leading to increased susceptibility to infection. The mission of the organization is to coordinate nationwide efforts to promote awareness, education and research, while providing a support system for patients with severe chronic neutropenia and their families.
- What does neutropenia do to the body and what are the symptoms patients typically face?
Neutropenia causes a reduced number or complete lack of neutrophils, white blood cells that defend the body against bacterial infections. There are four types of neutropenia: congenital, idiopathic, cyclic and autoimmune. The symptoms patients experience typically depend on which type of neutropenia they have and the neutrophil count. The lower the count, the greater the risk of infection. This risk increases if low neutrophil counts persist for more than three days.
A serious, life threatening bacterial, fungal or mixed infection can develop at any time if neutrophils are low. Types of possible infection include otitis media, tonsillitis, sore throat, mouth ulcers, gum infection and skin abscesses.
The duration of neutropenia may be short lived; however, those having symptoms consistently for longer than three months are considered to be suffering from chronic neutropenia, and currently there is no cure for this condition. There are treatments that can boost neutrophil blood counts. Unfortunately, they are expensive, not always covered by insurance, and often cause severe side effects, such as bone pain and headaches.
- What are some of the biggest challenges patients face who have neutropenia?
Often, diagnosis of neutropenia is difficult. Since it is very rare, its symptoms are frequently confused with other conditions or diseases, and early misdiagnosis is a common issue. To determine if an individual has neutropenia, a physician must run a Complete Blood Count (CBC) to precisely measure the neutrophil count. After diagnosis, finding a physician who can treat the symptoms of neutropenia and answer questions about living with this challenging condition can also be problematic.
Since neutropenia is rare, many patients have never met another person with the illness, so the feeling of isolation is common. Patients often feel like they live between being healthy and sick. They may look well on the outside, but their body is always fighting, which introduces fatigue, infections and other symptoms, as well as frustration from living with a chronic illness—something the patient’s loved ones and friends may not understand.
- What resources does the NNN offer patients?
The NNN has many resources to support neutropenia patients and families. For instance, the organization has a great partnership with the Severe Chronic Neutropenia International Registry. This group provides physician experts who help patients understand the condition when medical expertise is required.
A robust Peer Support Program, designed to help patients and families facing neutropenia, is also available. This program provides newly diagnosed patients and those struggling with symptoms or isolation the opportunity to speak to someone who has lived with neutropenia who can advise them how to thrive with this condition. Parents who have a child with neutropenia can also connect with other parents for support.
Educational newsletters, webinars, special events, updates and other information relevant to the neutropenia community are available through the organization’s social media platforms and website. Additionally, the Neutropenia Conference is held annually, encouraging individuals and families to come together to network and learn more about all types of neutropenia from experts in the field, as well as how to live with the condition. The event has been held virtually the last several years due to the COVID-19 pandemic but will eventually return to an in-person gathering.
An annual fundraising event is held in the fall: Steps for Neutropenia. This month-long virtual race connects family and friends around the world to increase awareness about this rare condition while raising funds to help sustain the organization so it may continue its important work.
Recently, the NNN launched an Ambassador Program to help raise awareness and encourage children and adults to share their stories with others in their community. Hopefully, each ambassador will learn to advocate for themselves and others, while also being empowered to define the role neutropenia will play in their lives, instead of allowing their condition to define it for them.
- What outreach activities does the NNN use to connect with patients and families?
Patients can also connect through the organization’s annual conference, special events and webinars. A detailed list of current events is available on the NNN’s website. The organization is also collaborating with RareConnect to build a “Neutropenia Community” on their rare-disease platform, in addition to developing a secure space where support groups can engage.
- What volunteer opportunities are available with the NNN? How can people support the organization?
There are many ways for individuals to join the organization in the battle against neutropenia. People can support it through advocacy, donations, fundraising or volunteering. Volunteer opportunities are open to individuals with and without neutropenia.
A variety of opportunities are available to choose from, such as awareness campaigns, event planning, fundraising opportunities, marketing and story writing. Those interested in sharing their time and talents with the NNN can connect with the organization through the website or by calling 1-877-326-7117.
- Where can patients get the most current information on new advances in neutropenia?
The NNN has access to the most up-to-date information on this condition and readily shares this knowledge online and at events. The best way to learn about new advances in neutropenia—such as clinical trials or at-home testing—is to follow the organization on social media and subscribe to the NNN’s newsletter.
- What closing thoughts should readers remember?
If you or someone you love is struggling with a rare condition, please do not go through it alone. Find others so you can share stories, lean on someone when you are ill or feeling depressed, and lift up others when they need it. If you need guidance and support during your neutropenia treatment journey, please visit the NNN website to find stories about others with this condition. We encourage all patients and loved ones to reach out to us for support.