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I m am curious about people's emotionally/ mental health with RP. My husband has RP and takes prednisone and Methedextrate.

he sounds exactly how I imagined

Thank you for keeping a spotlight on RP research. 🤍

Leena Gade is praised in this month's MotorSport magazine, it says she was "a revelation on EuroSport (Le Mans) and improved the coverage no end". Personally, I never understood how someone can watch 24 hours of any race, isn't it just too long? I am a bit weird though, I have an interest in motorsport, but I just find it hard to watch for more than 5 minutes, and I even find it pretty hard to even play a racing videogame for more than 5 minutes.

They need to get this mofo off of commentary,i get tired of hearing him smack his lips and mouth. Alot of times i have to turn the race off.

Your resilience and dedication, even in the face of unexpected challenges, is truly inspiring. We're cheering you on, Neilio!

Love Jeremy from his days commentating on CART with Ben Edwards through to now with the ALMS and now IMSA. Will always have to agree to disagree on the whole yellows issue though.

Another fine young talented driver coming from the world of Karting..More to come..🎉❤

'promosm' 😇

Totally called it!

Thank you. Been living with RP since 2012.

I’m so glad you pioneered this amazing foundation and research team Nancy and Neil! For all the good you’ve done already, you continue to do so much more! I had no idea Nancy was battling this when we spent so much time together at the track- which goes to show what a warrior she is or just how busy I let myself be and should have asked! So proud to know you both. ❤

You bet you’re going to be back in 2024!!! 🎉🎉🎉🎉

How do we get involved. I’m in the midst of getting an RP Diagnosis. Going on 3 years now. About to go for a Flow Cytometry test to determine whether it is Lymphoma or RPC. 10 days until my test.

❤💪🏻 so inspiring !!

Amazing and so inspiring. Thanks Nancy for sharing your story ❤

Brother I hear you.

♥🎬👏

You are our hope! Thank you for caring. ❤

GOOOOOOOOOSE BUMPS‼️ So powerful ❗️ Nancy and Neil you both are amazing for increasing awareness of not only RP, but all auto immune diseases❗️❤️🙏💪

When Jane was diagnosed after only 9 months (normally 2.75 years on average), the doctor told us that this is a very challenging disease. He said "it's probably the worst disease that you haven't heard about" I remember walking out of the room thinking yeah right, how bad can this be? Jane will get treated and everything will be fine. Less than 8 years later Jane succumbed to this dreadful illness at the age of 47. I pray that someday they will find a cure or effective treatments. Good luck and continue the great work you are doing at the RP Foundation. ❤

Amazing ❤❤ recently diagnosed and love every thing about this. Amazing work everyone!!!! Xx

Thinking of my Uncle Dan that has this terrible disease. Also thinking of everyone else who has it. My heart goes out to all of you.

❤

Thanks for all the games

I've been diagnosed with RP three years. On 2 to 5mg Prednisolone and 2000mg Mycophenate. Pred Forte knocks back Uvitis and Headaches. Would like to join any study. 60 Ireland. Reply

I wish that thinks could have better for her in Indycars.

I've watched the whole race and the film about it and I'm massively impressed by all of these people, Leena included. This podcast is absolute gold for me. Yes I know a lot of this, but there's plenty more to come. For instance this is the first time I've had official confirmation that they'd virtually run the car out of fuel at Spa. Thank you.

@jenngugsq18

I was diagnosed With RP at University of Michigan back in 2013. Suffered mostly airway damage. It's been a struggle. I hope that all those smart doctors and scientist can solve the mystery of autoimmune disorders. I worry for my children because I have noticed more than one family on FB where this has showed in more than one generation. My own mother was considered to be one of the most acute cases of asthma in our area and it has not slipped my notice that her symptoms and treatments where not much different than mine. Anyway just wanted to share a little bit of my story and say thanks to anyone and everyone who are trying to solve this riddle. It's to late for me but not for the countless others.

great interview mom!

💛

Thank you!❤

I was finally diagnosed properly after 17 years, so much damage to my body and a tracheostomy. It steals so much. ❤

I was recently just diagnosed with this and I am getting more information on why my blood pressure is dangerously high. I also have a grown child who is a race car driver.

I am from india and I was diagnosed with RP in my ears after changing many doctors in a span of 3 months..and every year from then on I’m on steroids for almost 2 months..I have had 2 episodes in my ear,2 in my nose and now it’s my eyes getting effected.I have symptoms in my ears n nose also..all tests including pulmonary n Ent is due for tomorrow.God help me ..how I wish I cd get rid of this pain forever.

Please help me. I am so tired, with so many flares trying to put a brave face for my youngest son which already suffered enough from our divorced. My eldest, we are trying to put him in a clinic for drugs, and she keeps bullying me. Please help me

I got diagnosed at 35 now I am 50 also have RA, w 3 kids 21, 19, and 16 divorced in charge of care. One of the reasons he left he had an affair because he got tired of a sick wife that was sick now I have teenagers, especially my 19 girl who keeps telling me she hates me because I am sick. My ex keeps telling me to not say how bad my health is and not to scare them but I have severe RA and she caused me so much stress. She is so nasty towards me. I wish someone can talk to her or provide me with a link that can talk to teenagers about how mothers feel w this health issue because I also have had Polychondrythis since 2007 the same time as was diagnosed w RA. Been w biologics and after one year I have to go for stronger ones. Now, with blisters on my lips, clicks in my throat, hard-to-swollen liquids and smash food, sometimes to breathe, broken ankles, bones that don't grow so another surgery and my daughter keeps stressing me. Can't keep w driving w my other kids and her bullying. Is any RUclips that can explain her how difficult is my daily life and my diagnosis

Thanks.

Our son was diagnosed with RP a month ago at the St. Louis VA. He was 37 at the time, and has since developed a pulmonary embolism and strep throat. The professionals admit they are uncertain about his situation as not had a patient this young with the condition. He is on methotrexate as well as other medications. We feel at a loss as to the best way to support him. He is a commercial diver but unsure how this will affect his career. Any guidance would be appreciated.

Thank you so much for sharing! My journey with RP has been difficult but I have managed to find my way to Penn Medicine. Thank you for all your help getting this program implemented and for all you and your family do with the Race for RP! I am part of the research program and look forward to contributing however I can to find better treatments and maybe a cure! Just keep swimming!

Boy, I'll say! (about the awareness). I just found out about Relapsing Polychondritis yesterday. I'm 53, quickly heading to 54 and I've done a lot of research into my symptoms. So, it was never mentioned when I went to a doctor and told them about my swelling ears and that the cartilage in my nose hurts and that my cartilage seems to have gone all stiff everywhere. The best of advice was that maybe it was an allergic reaction, growing pains, early menopause, etc. Many just stared at me blankly or told me I needed therapy as no one has symptoms like that. However, the first mention of it I saw was on Dr. McDougall's site in a story from a woman who knew exactly what it was and decided to go from being vegetarian to eating as Dr. McDougall suggests, by cutting out added fat and all animal products, and she stopped having the symptoms. Under her story Dr. McDougall commented and explained that the problem with this, Lupus and Rheumatoid Arthritis are from the same cause: the body attacking proteins in itself that are similar to the ones in the animal proteins that leak out of the gut and are attacked as foreign invaders. It's basically the same thing as what happens to Celiac sufferers, except with animal proteins instead of plant (gluten) proteins. Thinking about all this information, I realized the times I did not suffer any of these symptoms was when I was eating mostly beans and rice for protein (because we were poor), experimenting with the way of the vegan, or following Dr. McDougall's advice. In fact, I had them seldom when living alone, but when I live with other people I tend to eat more meat because I am cooking for them and they eat more meat. And, then I suffer. I hadn't realized this before, because I didn't even know what was happening. I thought it was just a digestive issue that made me feel worse. And, I had given up even thinking about the majority of the symptoms I experience that are, as it is now obvious to me, from Relapsing Polychondritis. I assumed they were just part of whatever the bigger picture problem was. Especially as they didn't happen all the time. Anyway, that' s why I officially gave up animal products yesterday and am sticking to it. I was about to make organic, grass fed beef burritos. Instead, I made a mashed potato wrap with taco'esque spices and fixings on it. It was lovely!

Yesterday, while trying to figure out what is wrong with me, again, and with much prayer to Jehovah as my companion, I was looking up IBS information and ended up finding a list on the McDougall site but for some reason the list also had Rheumatoid Arthritis and Relapsing Polychondritis on it. I had never heard of Relapsing Polychondritis. I read the story of a woman switching to eating the way Dr. McDougall suggested and there were a few things that she said about her symptoms that made me sit up and take notice. So, I went to another medical website and read about it, and so much that it said about the symptoms were things I would go to the doctors over, then get told I am crazy or just depressed or it is just growing pains or it must be early menopause, or, maybe its allergies. I finally gave up even presenting such symptoms. When I eat much more vegetables than anything else, I am much less likely to have the problems I read about, but they still happen. This woman was saying giving up meat and going on a no added fat, high starch fully plant diet made it so that she never had the symptoms anymore. At the bottom of her story, Dr. McDougall explained that auto immune diseases such as this, Lupus, and Rheumatoid Arthritis work the same but are named different only because they are attacking different tissues or sets of tissues. His description of it was that it happens due to proteins escaping the gut and the body attacks them as invaders and that leads to it thusly also attacking similar proteins in us, over time. This is also what they say is the problem for people who can't eat gluten; but it is just a different protein. So, it makes sense to me, considering the woman's story and my personal experience when I did fasts or some experimentation with eating a vegan diet or one like Dr. McDougall suggests. Dr. Fuhrman, whose name I may have spelled right, suggests a fast of 7 days to shut down the immune system and reboot it. I read it in a book of his. Dr. McDougall suggests eating lots of starchy vegetables and grains, not adding salt or fat and also having fruits and other vegetables. I just wanted you to know that, in case no one ever told you before. Because, as a certainty, there is no harm in taking a few days to try eating that way and finding out if it helps.

Hello! I was just diagnosed with RP. It started as ear swelling but had experience shortness of breath, fatigue and joint pain before but never in my life heard about this before. I’m with Dapsone and Prednisone. Willing to join any support group and participate in any study. I’m 49 and from Puerto Rico.

give my man the suprelicence! i wanna see him ripping on them GP's!

It’s a real shame that F1 isn’t going to let him race next season. It’s a big loss, could of been that next big step to push F1 to the US audience