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…
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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…
Last week, I read Gill Paul’s latest novel, “The Lost Daughter.” The book is a historical fiction account of Russia’s Romanov family. It is well-known that the Romanovs and hemophilia are connected, but I had no expectation that bleeding would play into the plot. Near the beginning of…
Let Us Cross the Bridge
A few years ago, my family and I attended an inhibitor symposium in San Francisco. While the conference was jam-packed with incredible information, we did have a little free time to explore the city. Fisherman’s Wharf had great food and beautiful views of the harbor. We stood on a…
Recent Posts
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- Growing up before treatments for hemophilia were safe, part 2
- Routine dental work safe in hemophilia patients with clotting factor boost
- As my son stays busy chasing his dreams, pride and sadness mingle
- In sharing our rare disease stories, our collective light shines brighter