This was AMAZING!!!!!!!! We learned how to find veins and I got a vein on the first try – with a LOT of help and a willing volunteer. Great people, great education and a lot of fear taken away. So empowering! Thanks for inviting us Randy!!
This mini Episode is just me talking about some events that have happened and our upcoming event in SoCal on Nov. 2. Comment below and subscribe!
Surpise! An extra podcast this month!!
So excited about this lovely guest! The creator of the popular Facebook page Hemophilia Mother, Milena was so cool to talk to. She is just so wonderful and really making a difference out there. You are going to really enjoy this amazing woman. She is heavily involved in the community and is focusing on how to help the world. She mentions that 60% of Hemophiliacs around the world are not receiving treatment. Can you believe that? I know we struggle here in the states because factor and the care is outrageously expensive, but at least we can get the medication. So what can we do to help all of our hemo families? Get involved.
Mentioned on the pod:
Find More Milena on her Hemophilia Mother Facebook page!
Thank you Milena, you are a such a beautiful person!!!!!
Jane has some amazing stories about her experiences (and foreshadowing) with Hemophilia and has the coolest kids on the planet. She has lived a very interesting life and has taught me a lot and given me a of of ideas. The differences in how the community was and how it is now is so different, some good, some bad, but she gives us some great ideas on how to bring the community closer together.
There is a little background notice on this recording so bear with us, this is great content.
Mentioned on the Pod:
CHLA and CHOC
Get 10$ for the survey: Identification of Patient/Parent Mentors & Other Preferred Resources in Bleeding Disorders: Survey Responses Needed…KOLComm, a market research company based in New Jersey, is requesting your help in completing a 10 minute survey. All survey takers will be paid $10.00 for completing the survey in full. The purpose of this study is to understand the challenges of living with bleeding disorders and how patients and parents support each other.
Great thoughts from Jane: Get a Master – find an HTC or doctor that you trust and utilize them. Every trial and hard time happens for a reason and we are all better for it (EVERYone can benefit from this outlook!)
If you want more Jane, head over to her Facebook page!
Thanks again Jane! See you soon 🙂
Everyone in my area knows Randy, she has been a wonderful resource for many of the families in the Southern California area. She conducts many educational programs and is so caring. When you meet her it feels like she has been a part of your life forever. She has a warmth and love that just envelops you and makes you feel safe. Randy really encourages us to get out and meet people! Start with your foundation, find a support group and if you can’t find one – start one. Attend as many events as possible and even if you are shy, give or get a phone number or contact info so you have a lifeline when you need it. Reach out to the manufacturers and see if they have events – I think I am going to get on that one! Mentioned on the chat: HIV and Bleeding Disorder Community Laurie Kelley SoCal Foundation NHF and if you like to tweet, they have monthly chats usually on THIRD Wednesday of the month at 1pm EST just go to #HemoChat and join the conversation HFA Cottage Hospital If you felt a connection or want to just chat with this amazing women please reach for more Randy! email@example.com Call her! 805.402.5952
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Our first Meet HU Event was August 9, 2014 at Loma Alta Park in Altadena, CA. There are two playgrounds, swimming …
I just love this guy!!! He is so genuine, caring, articulate, funny and gives so much with seemingly endless creativity and energy. Patrick James Lynch is an actor, producer, director, speaker and advocate for the Hemophilia community. He is also the creator of Stop The Bleeding web series on youTube, which is popular in our community.
He maintains a very open journal on his home page which he speaks about his experiences with getting proper treatment at Kaiser and thankfully, he is making progress with them. His journal is great if you all haven’t read it already. It is insightful and honest and sometimes hard to read because it hits close to home.
I LOVE Morgan! I had the pleasure of meeting her at event that Randy puts on (thanks Randy!) and she is just one of those people that instantly makes you feel comfortable. She is happy, helpful and has a beautiful smile. She is very special in the Hemo community because she is engaged to a severe A and is super supportive and loves to learn and help the community.
She tells the tale of how she met her love and her first infusion experience. As always, I learned a lot from hearing her thoughts and experiences. She has some great ideas for an event for those of you who are a sibling, grandparent, spouse, supporter, friend or family of someone with a bleeding disorder. If you are interested in getting more info about that, please reach out to her and let her know you want it!
Mentioned in the Pod:
Coastal Ride this is insane and I am so impressed by the physical ability of these people. Fantastic promotion of healthy Hemos and a fantastic event.
Blood Donation Eligibility a quick Google search and this was the best I could find. You will need to contact your local organization to find out if we are still banned from donating blood.
Reach out to Morgan:
Cazandra MacDonald is awesome and if you have any experience with Hemophilia, you know that she is a fantastic advocate and positive force in the community. She is a pastor’s wife, a musician and heavily involved in church ministry and “there is no such thing as normal” in her life. She was introduced to the bleeding disorder community with the birth of her first son and it was a shock to her.
She started the Two Brothers With Hemophilia blog, which personally helped me as I was learning about Hemophilia. She started the blog as a way to get out the thoughts and feelings she was having. She never thought anyone would read it, but as she started hearing back from readers, she knew it was helping other people.
Oozing Every Day is another blog that she started which is more faith based. She is passionate about motivating and empowering women and is happiest when she has the opportunity to help others.
She really believes in the power of connection. She recommends getting a phone number, a facebook of someone that you connect with so that just in case you need someone to talk to, you have a contact who understands what you are going through. She lost her brother, Ronaldo Julian, a brother she never knew, but means so much to her.
I consider Cazandra an expert and so helpful and you will feel her willingness to help and caring spirit. She has been through, helped through and seen a lot in her years living with hemophilia
Parting words: It is going to be ok. Take what you can right when it is happening and live each moment. Take it day by day, moment by moment and sometimes breath by breath.