rare blood disorder

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My son

I would of rather than it been me. Matthew was a sweet, kind & thoughtful person. He would of given his shirt off his back if you didn’t have one. I miss him everyday and so does his almost 18yo beautiful daughter. He would of been a good father if Factor V which we didn’t know he had to his precious life. 😭

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Factor V

This is in my mother’s side of the family. We know her father had it. It was passed down to myself. My oldest son died from FV when he was 34yo leaving behind a beautiful 3yo daughter. My mother died 5yrs later. I’m so far not affected by FV. My doctors call me a carrier. My other two sons have been tested along with my two older grandchildren (18 & 13yo) and they are negative thx god. This condition has caused so much heartache. I just hate this condition. It took my son 15yrs ago & I’m still fearful for my 3 yger grandchildren.

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World Mental Health Day documentary + panel 💥

Hi, Mighties!

Need plans tonight? There’s a free documentary premiering at 4pm PT / 7pm ET called “Let’s Talk.” It tells the story of five individuals who live with bleeding disorders and the effect their conditions have had on their mental health.

After the documentary (which will stream on Facebook), there will be a live talkback panel. I’ll be chatting about The Mighty and my experience with illness and mental health as well.

Details and RSVP here:


#Hemophilia #RareBloodDisorder #ChronicIllness #RareDisease #MentalHealth #Depression #Anxiety


Does anyone have tips for #Traveling with #ChronicIllness ?

I’m flying cross country this coming June and I have no idea how I’m going to do things like, get through tsa in a wheelchair, sit for 4 1/2 straight, and get seating with my wheelchair... any tips would be super helpful!
#TravelTips #AirTravel #Travel #Fibromyalgia #RareBloodDisorder #AutoimmuneDisorder #ImmuneThrombocytopenia #MuscularDystrophy

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My new scar

So, I had a brain biopsy Tuesday morning. When I woke up after the surgery, I had a two inch tall and wide patch on the back on my head and the back of my neck hurt like the dickens. I was in the hospital for about three days and I took the bandage off today to see me new battle scar. You can hardly see it. I am a bit disappointed but oh well. #Scars #RareBloodDisorder #RareDiseases


How do you maintain your energy with a #RareBloodDisorder ?

I have a #RareBloodDisorder and I am constantly tired. It is actually inhibiting my everyday life. How do you maintain your energy?