Recently, I’ve been reading a lot of online content about hemophilia on forums dedicated to the disease and in articles. It could be because my Google Alerts and scholar searches are sending me plentiful links to browse. I’m noticing some consistent themes online: Moms are desperate for solutions;…
Columns
We All Need More Disney Moments
When “MacDonald the Younger” was 5, a social worker from the hemophilia treatment center gave his name to the Make-A-Wish Foundation. They granted my son’s wish to go to Disney World. I couldn’t believe that a 5-year-old child would want to go to a theme park filled with great…
I’m confined to my bed, suffering from a bleed once more. Many hemophiliacs dread having a bleed in this area, called the iliopsoas muscles. It’s considered a very serious bleed, as it can result in permanent femoral nerve damage and, in some cases, amputation of the leg. The…
My 13-year-old son, Caeleb, is a victim of bullying. This school year had a better start than the previous one until a couple of boys decided to pick on my mighty warrior. Name-calling and lies are hurtful, but at least words don’t leave marks on our bodies. But when…
I got home from work and checked my mail. I had received another notice from an “impartial third party” stating: Dear Ms. Horowitz, We have received an inquiry from your insurance company and we have determined your treatment is medically necessary. You are…
Last week, my husband had another random bleed in an extremely unfortunate location: his iliopsoas muscle group. It started as a lump on his hip, which he didn’t initially think much of because bruises with swelling are common among people with hemophilia. He didn’t realize it was another bleeding…
One of my favorite educational philosophers is Ruby Payne. Payne focuses on the unwritten rules of social classes and how various groups respond to and receive information. Payne suggests that the ways we communicate our needs depend largely on our environments. In other words, we are a product of…
My mighty warrior, Caeleb, has been in great health for the past five years. Five years of the occasional ear infection, strep throat, or allergies, but no bleeds. In the community where we’ve lived for the past 15 months, my son is seen as a regular eighth-grade boy. Many know…
Life Between Peak and Trough
One of the challenges for individuals with hemophilia — whether severe, moderate, or mild — is bleeds. Often people with hemophilia will struggle with bleeds into their joints. The bleeds are painful and limit mobility. If left untreated, they can cause long-term damage, such as arthritis.
I lost some money today during an online transaction. It was 3,150 Philippine pesos (around $60). The amount was a client’s payment for a product she had bought from our online jewelry store. That store is our bread and butter. Currently, we are struggling due to the celestial prices of…
Recent Posts
- Embracing the strange signals that come with a bleeding disorder
- Who am I? A woman with a bleeding disorder. See me. Believe me. Treat me.
- Frequent sports participation boosts bleeding risk in new hemophilia study
- From his bicycle, my hero with hemophilia reclaims his world
- Gene therapy Beqvez sustains gains in 6-year hemophilia B study