patient & family support
E-cards for Neutropenia Patients
Send an E-card
1. Select the e-card you want to send.
2. Select a patient to send the card to and enter their name in the form below, along with your contact information.
3. Click Send, and we will forward the e-card to the patient of your choosing.
Untreated since 2018 only told in 2021 has has three pulmonary embolisms. She is always ill. She's looking for support
Juan Sebastián Cely Jiménez
Desde su nacimiento hasta el momento la mayor parte de su vida ha estado en hospitales todo el tiempo, por su enfermedad tiene poco contacto con la gente, hace poco empezamos el tratamiento con filgastrim que afortunadamente está funcionando. Manteniéndolo estable.
Translation: From his birth until now, most of his life he has been in hospitals all the time, due to his illness he has little contact with people, recently we started the treatment with Filgastrim which fortunately is working. Keeping it stable.
I always am fighting low grade infections that in normal people wouldn't happen or they will get better without drugs even. Not me- most of the time drugs for infection aren't prescribed because Dr. Says it is a mild infection you will get over it - or you would be sicker if you needed treatment. I went to a hematologist who said I have to a bone marrow biopsy - i am terrified of pain. I also went to an expert who was so rude he walked out after reviewing my idiopathic neutropenia and said he couldn't help me- and walked out.
Madeline was diagnosed in her senior year in high school and has been learning how to deal with the challenge of living with cyclical neutropenia ever since. Recently she was also diagnosed with thrombocytopenia. She is striving to stay well as she frequently travels as a model to various countries, including China, Malaysia, Hong Kong, Japan, and India. Besides modeling, she hopes to study Chinese and become fluent and later use Chinese in her future career.
Luke was diagnosed with neutropenia at 16 months, after having a rough encounter with rotavirus, that lead us to a hospital stay. We’ve been in and out of hospitals with many scares, countless blood draws and Iv’s. He currently sees a hemotology as we continue to seek answers for his cause of neutropenia. He’s now 22 months. He’s a strong little warrior with a strong personality, he’s amazes us with his strength. He continues to grow, everyday is a new day for us.
Houston & Elizabeth ( TWINS)
Houston is a twin to Elizabeth. They were born at 32 weeks. At about 2 weeks old the NICU told me they found something wrong with their immune system and their blood counts. Once we was released from the NICU we followed up with a hematologist where had a bone marrow aspiration and biopsy that came back with chronic Neutropenia. Also his twin sister has the same type of Neutropenia. We have fought sickness and infections like crazy! But his sister has been the sicker one out the two but their ANC runs about the same. On a daily basis their ANC is around 800 - 1000!
Nathan was diagnosed with Neutropenia as a baby and has had numerous infections over the years. Due to failing vision related to retinitis pigmentosa, he was diagnosed with Cohen Syndrome aged 25. He has just begun treatment with Neupogen.
My daughter was diagnosed with neutropenia since birth. It was scary at first but now we know the protocol and have to keep close eye on health and hygiene because she has started school.