Blue Lips Foundation - Meredith's Story

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BlueLipsFoundation.org

BlueLipsFoundation.org

8 жыл бұрын

Our (ph)ight against pulmonary arterial hypertension (PAH) is directed at funding research and development of novel diagnostic tools to advance early detection and diagnosis. We are dedicated to educating the gatekeepers of medicine as to the early warning signs of PAH - and providing them with the necessary tools to screen PAH candidates through efficient and less-invasive methods. Our mission is to “rule in” PAH early and efficiently to give those living with this disease every opportunity to live extended and quality lives after diagnosis.
Meredith knows all too well about Pulmonary Arterial Hypertension. It took her mother’s life when she was 12 and reappeared in her own life when she was diagnosed at 34. She is a stay-at-home mom to two boys - ages three and one. Being told she had a disease known as the "silent killer" put the (ph)ight in her to do everything in her power to help others that are currently or will be in her shoes one day.
She and husband, Randy, founded the Blue Lips Foundation to further educate, raise awareness and fund research dedicated to early detection and screening of the disease. They decided it was their time to make a difference in the (ph)ight against PAH.

Пікірлер: 17
@luisabel6303
@luisabel6303 7 сағат бұрын
My mother passed away on May 21st of this year from this horrendous disease. Her final weeks can only be described as cruel. In her honor, I plan to donate to this foundation for the rest of my life so that, if I can help it, others don’t suffer like my precious mother did. Bless you for starting this foundation. I don’t think I would’ve known where to begin.
@BrittKatSlat
@BrittKatSlat 5 жыл бұрын
Hey Randy and Meredith, fellow born and raised West Des Moin-ian here that now lives in Los Angeles with my Husband and soon to be first time Mom. I want you to know I’m incredibly in awe by your strength. You’re both such striking people with raw felt emotion, passion and bravery. Wow! You’re inspiring. Thankyou for creating this foundation. I gave a little money last week but I hope to contribute more. If there’s anything I can do out here in LA to further the foundation and its awareness, let me know. I am a patient at UCLA. Meredith, you are a warrior. I wish you so much peace and satisfaction.
@darladuty3850
@darladuty3850 7 жыл бұрын
I was glad to stumble on this video. My 25 year old sister died in 1999 from PH, we didn't know what it was until after she died and an autopsy was done. My niece, her daughter, was 20 months old at the time and she is now 18 years old. She was just diagnosed with severe Idiopathic PAH and is on Sildenafil & Lasix orally and has the pump and receives Veletri round the clock. Her specialist's goal is to get her to 20 ng, she is now at 12. I adopted my niece the first part of this year, so am fortunate enough to get to call her my daughter. She was advised to sit out this semester of college, however, she told her dr. that was not an option. She dropped from 16 hours to 9 hours and the college she is attending, Tarleton State University, has been so helpful in making sure she has all she needs. Dr. Bartolome at UT Southwestern in Dallas told Macie that she is a "unicorn", the rarest of the rare. I wish you much luck on your battle with PH. Here is a link to the story that a local on-line paper did about her and her determination to go on. #maciewillwin theflashtoday.com/2016/10/04/tarleton-freshman-choose-fight-over-flight/
@meredithwilharber297
@meredithwilharber297 6 жыл бұрын
So sorry to hear about your sister and your niece (daughter!). Sounds all too familiar with my story with my mom. Your niece sounds like an amazing young lady and is not letting PAH get her down - that's the best attitude to have when hitting this disease head on. Wish you all the best.
@linfordpierce3589
@linfordpierce3589 2 жыл бұрын
PH friends 7 years of having pah I'm on three different medications I like your video stay strong pH friend❤💯
@JaneNorthrop
@JaneNorthrop 8 жыл бұрын
Thank you so much for this video..... I have tears rolling down my face.... my daughter, who was 15 years old was diagnosed in 2010 with PAH caused by congenital heart defects that weren't diagnosed. She has had PH most of her life we just didn't know it. She has blue fingernails and will get blue lips quite frequently. When she was finally diagnosed she was a class 4 and I know she wouldn't be here today if I hadn't pressed so hard for that diagnosis. Almost six years later she is stable and has dropped to a borderline 3/4 or high 3. All we can hope and pray for at this time is stability. She is on O2 24/7 and is on subcutaneous Remodulin along with Letairis and Adcirca. Everyday is hard and she has very limited energy. I will be sharing this on my personal facebook page as well as my facebook page I do about my daughter "A Day in the Life".
@apanawhitehill
@apanawhitehill 8 жыл бұрын
jane your daughter sounds like an amazing PHighter!!
@rjwilharber
@rjwilharber 8 жыл бұрын
+Jane Northrop God bless your daughter and your family Jane. We'll work as hard we can to change the course of this disease through early screening and diagnosis. Best to you. -Randy Wilharber
@alisontunny5947
@alisontunny5947 6 жыл бұрын
Thank you for sharing your story and telling us about your foundation. I've only been recently diagnosed but have had three episodes of having hundreds of small pulmonary embolism since 1988. I'm trying to find out as much as I can about it. I hope you stay well for as long as possible!
@meredithwilharber297
@meredithwilharber297 6 жыл бұрын
Sorry to hear about your diagnosis but hope you are doing well and medication is working for you.
@DoloresJRush
@DoloresJRush 5 жыл бұрын
I was just diagnosed with PH (Group 3). I've had blue lips with asthma attacks (diagnosed in high school). I also have sleep apnea (diagnosed in Jan of this year.) Thank you for this video.
@pdbbndorco2452
@pdbbndorco2452 5 жыл бұрын
I was diagnosed in September of 15’ with idiopathic stage IV PAH. I’m 38 now, I have four kids. Twins that are 10, 4 years & 2 years and am married. I have really struggled in many ways with this disease and am currently taking adcirca, letairis and uptravi. Had an echo a month ago and the estimated pressures are through the roof. Going in for my fourth right heart catheter in about a week. I was doing some work listening to this video and the last thing I heard was that the blue lips foundation was in the business of keeping families together. I’m scared my wife is going to leave me during this process. I receive little support but I need it desperately. I have nobody else and I’ve always assumed that when you’re married you stick by each other through this sort of ordeal one way or the other. I don’t know why am posting this now but I need help. Any suggestions, information, comments, anything is appreciated thank you
@BrittKatSlat
@BrittKatSlat 5 жыл бұрын
Hey there. I just wanted to say that I read your message. I hear you and I understand you. Everything will be okay if you believe in your own peace. This disease is so difficult it seems. (I’ve been researching). You’re already so strong for getting diagnosed and going through all that you have. As far as your wife not being there for you. I would say- let her know seriously and emotionally how that makes you feel. And what you need. It’s perfectly normal and necessary that you NEED help with life from this disease. If she can’t be there more, then rethink her love for you. Be strong my friend. Keep asking for help and being there for yourself. Love is better than that. I can assure you. God bless you.
@janedoe9544
@janedoe9544 3 жыл бұрын
Doctors ignore it even when it's IN Their Face! I Know !
@SurvivingasMom
@SurvivingasMom 7 жыл бұрын
I was just diagnosed with PH. My name is Meredith too :-)
@jenettejimena3207
@jenettejimena3207 6 жыл бұрын
i also diagnosed wd ph....sad but have to accept it....only god knows how long we could live.....meds are too expensive....im just trying be ok but im beginning to.........
@meredithwilharber297
@meredithwilharber297 6 жыл бұрын
What a beautiful name you have! :) Hope you're deal well with PAH and that medicines are helping you PHight this nasty disease.
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