Hope For Hemophilia
  • Home
  • About
    • What We Do >
      • Programs
      • Patient Stories
    • Meet Our Team >
      • Board of Directors
      • Advisory Council
      • Our Staff
      • James' Family Story
    • Resources
    • Hope Merch
    • Leader Resources
    • Sponsors
    • Financials
  • Events
    • Prophy Conference
    • Advancing vWD Management
    • Joint Health Conference
    • HOPE Conference >
      • In-Person
      • Online
    • Emerging Therapies
    • Crawfish Boil
    • Hope Sessions
    • Qualified Training
  • Media
    • Unmuted Podcast
    • Hope Factor
  • Contact
    • Request A Speaker
    • Privacy Policy
    • SMS Privacy Policy
  • Applications
  • Hope News
    • Industry News
  • Donate
    • $25 FOR '25
  • Advocacy
    • Hope On the Hill

Hope News


Overcoming It All

5/27/2020

Comments

 
Picture
Ivan Giron’s life has been anything but easy, but he was able to overcome his past and find his purpose, even when all the cards were stacked against him. Ivan was born in the city of Bell in Los Angeles County, CA. At 2 years old, he was diagnosed with Moderate Hemophilia A after busting his lip on a toy car. His mother was scared which caused her to be overprotective throughout Ivan’s childhood. She made him wear a helmet and didn’t want him to play any sports. Ivan convinced his mother to let him play soccer once he turned 7, but he was forced to quit once he reached high school because of excessive ankle bleeds from his hemophilia. He says his childhood was difficult because he wanted to be active so badly, and wasn’t able to do the things other kids were participating in. He was competitive, and wasn’t allowed to compete. He was frustrated and often picked on, because no one understood his situation. 
​

Ivan’s father faced a very tough childhood himself, and because he had a hard time coping, he became an alcoholic as an adult. His father was violent, angry, and abused drugs throughout Ivan’s life. He followed fairly close to his father’s example, and joined a gang at just 15 years old. He was angry because of hemophilia and his family life. He saw the other gangs in the community earning money and making a name for themselves, and he wanted those things also. He and several of his friends started their own gang, and quickly began growing their circle. Ivan was buying guns, selling drugs, recruiting new members, and ultimately watching some of his closest friends go to jail. 

At the age of 18, Ivan was shot in the right ankle.

Read More
Comments

STOP! I’m a Bleeder!

5/13/2020

Comments

 
Picture
Being a young parent isn’t an easy task, but being a young parent and having your child diagnosed with a severe bleeding disorder is something most people never imagine.  This was the case for Jeff’s parents.  At just 19 years old his mom gave birth to him, and having no family history his diagnosis came with quite the shock.  But this didn’t determine his life.  As Jeff says “it’s part of your life, not your whole life.”
    Jeff was always very active, played competitive baseball, and unofficially played football.  He remembers kind of doing his own “prophy” before that was really a thing.  And because of this, his only real damage today is a left elbow target joint.  
    At around the age 15 years old, Jeff found a passion in stock car racing.  Which as you can imagine, made his parents very nervous.  Jeff said his moms favorite thing to always tell him was “you can do it if the hematologist says it's ok”.  The reasoning behind this, is because his parents never wanted to be the reason he was limited in activities.  This way the disappointment was left to the doctors and not them.  Personally, as a mom of a young Hemophiliac I think this is great advice, and plan to use it in my future battles with out son. 
    When Jeff turned 18, he got involved with demolition derbies.  His exact words were, “I was hooked after my first race! The adrenaline was unmatched!”  Although this was not something his mom would have chose for him, she was on board and would bring his factor into the pit so he could infuse right before the race.  Jeff also had his car painted to say “STOP! I’m a bleeder!” on the drivers door so anyone who saw it would know.  
    “I was an adrenaline junky, and hemophilia took a back seat.”  Because of the addiction to this feeling, Jeff started only infusing when he absolutely had to.  As a result, he was in a terrible ATV (alterraine vehicle) wreck that left him in the hospital for 42 days due to severe injuries and bleeding caused from his hemophilia.  During this time, his pain was indescribable.  He was on very high doses of IV (intravenous) pain medications.  He says, “I remember just wanting out, I couldn’t wait to be able to leave the hospital.”

Read More
Comments

Things Can Change...

5/6/2020

Comments

 
Picture
Leemar Yarde has hemophilia B with an inhibitor, and he lives on the tropical island of Barbados. He is one of six people with hemophilia in his  family, but he's the only one with an inhibitor—in fact, the only one on the island with one. So he often meets new
challenges. Growing up in a family with two older, experienced relatives with
hemophilia has its benefits, but here's a little backstory. 
​
Barbados is a developing country. The medical care there is free, and that is
commendable, because many people can’t afford medical care. However, the
downside is that due to the cost of some medicine, the government can only afford
either generic or very limited supplies. Budgets are often allocated to life-
threatening illnesses, and the government doesn’t view hemophilia as one. As a
result, very limited amounts of clotting factor are imported for both types of
hemophilia, and none for inhibitors.

Barbados doesn’t have a hemophilia treatment center (HTC) or even a
medical facility dedicated solely to hemophilia. What we do have is a hematology
center that caters to various blood disorders. That center has a handful of
experienced hematologists; one or two have dealt with inhibitors in different
countries. Sadly, a hematologist can only work with the tools available. Leemar remembers
having to wait from 8 am until 12 pm to see the doctor, then being told that the
hospital had no factor at that time. Still, in Barbados, their fortunate because
some of the neighboring Caribbean islands can’t afford any clotting factor.
​
So for Leemar, at one point all hope seemed lost...until he met “her.”

Read More
Comments

    Hope Charities
    ​​Author

    Hope Charities is a 501c3 non profit that strives to make a difference in the lives of people who live with rare and chronic illness. We hope this blog gives you deeper thoughts and resources as you learn to navigate through life's ups and downs. 

    Archives

    April 2025
    October 2024
    August 2024
    May 2024
    March 2024
    December 2023
    July 2021
    June 2021
    May 2021
    March 2021
    January 2021
    December 2020
    September 2020
    July 2020
    June 2020
    May 2020
    April 2020
    March 2020

    Categories

    All

    RSS Feed

GET TO KNOW US

HOPE staff
​read our blog
​board of directors

CONNECT

contact us
request a speaker

RESOURCES

apply for assistance
request a speaker
financials
​FAQ

GET INVOLVED

volunteer
upcoming events 

Online Event Terms Of Engagement 

[email protected]
​​888.529.8023 office
​888.835.1449 fax
Picture
©  2022HOPE CHARITIES. ALL RIGHTS RESERVED.
what is hemophilia what is hemophilia a hemophilia treatment hemophilia symptoms hemophilia definition Haemophilia Genetic disorder anemia hemophilia causes is hemophilia dominant sickle cell anemia symptoms of hemophilia what causes hemophilia von willebrand disease treatment for hemophilia hemophilia meaning hemophilia a treatment hemophiliac hemophilia punnett square is hemophilia dominant or recessive porphyric hemophilia hemophilia of georgia difference between hemophilia a and b biomarin hemophilia can women have hemophilia von willebrand disease what is hemophilia a indiana hemophilia and thrombosis center hemophilia medications when was hemophilia discovered hemophilia treatment centers acquired hemophilia how is hemophilia diagnosed petechiae Intravenous therapy hereditary factor viii deficiency is hemophilia a dominant or recessive trait hemophilia a treatment Haemophilia Genetic disorder Haemophilia B Disorder Royal family hemophilia gene therapy why is my nose bleeding so much bleeding Breakthrough bleeding copay assistance programs Copayment premium assistance program Stop the Bleeding National Hemophilia Foundation Hemophilia Federation of America hemophilia genetics hemophilia treatment hemophilia meaning hemophilia symptoms types of hemophilia hemophilia b hemophilia diagnosis hemophilia wikipedia hemophilia financial assistance program hemophilia resources hemophilia help Factor VIII Factor IX Factor 8 Factor 9 Clotting Factor 
  • Home
  • About
    • What We Do >
      • Programs
      • Patient Stories
    • Meet Our Team >
      • Board of Directors
      • Advisory Council
      • Our Staff
      • James' Family Story
    • Resources
    • Hope Merch
    • Leader Resources
    • Sponsors
    • Financials
  • Events
    • Prophy Conference
    • Advancing vWD Management
    • Joint Health Conference
    • HOPE Conference >
      • In-Person
      • Online
    • Emerging Therapies
    • Crawfish Boil
    • Hope Sessions
    • Qualified Training
  • Media
    • Unmuted Podcast
    • Hope Factor
  • Contact
    • Request A Speaker
    • Privacy Policy
    • SMS Privacy Policy
  • Applications
  • Hope News
    • Industry News
  • Donate
    • $25 FOR '25
  • Advocacy
    • Hope On the Hill
Live Chat Support ×

Connecting

You: ::content::
::agent_name:: ::content::
::content::
::content::