Not JUST Ehlers Danlos Syndrome
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- čas přidán 21. 08. 2024
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Cheyanne, make sure you read all the fine print on the research study and keep a copy with you, that highlights all the big stuff. I started a research study once before and they have a big tendency to take more from you than originally agreed too. And also not give back(be it specific testing or info from tests you did, compensation of any type including transportation,etc) all in writing. If they try to violate that, speak up right away. No matter what position you are in(like in a scan, on a bed getting a biopsy,etc). They have a contract with you that they must follow.
I think I rmbr you mentioning doing studies before but please keep this in mind. My reminder of this was when you mentioned here, what sounded like “extra” bone marrow being taken than you were expecting. And that’s something you probably know can cause long term nerve damage and bone pain which no one needs or wants more of!
I do truly hope this all goes well for you, and more answers come, that can help you live your life even better than you already do! 🙂💞🌻
Hi Cheyanne - I’m so happy you came to the NIH. I’ve worked at NIH since 1987. I always wish you the best and keep you in my prayers. ❤️🤗🙏
I am so very sorry your life is filled with illness, and all that entails. You are a beautiful soul. May God bless you and much love.
Oh wow Cheyenne I have had many of the tests you've talked about during this vlog. I too have liver fibrosis and gastroparesis I just got done with my last venofer infusion for severe persistent iron deficiency anemia. So crazy how our bodies work and dont work sometimes. Thank God for wonderful doctors. I couldnt imagine having to think about making the decisions you have to make. You are so strong and have such a great knowledge about your health that's amazing! Praying that whatever decision you make will bring you peace. Lots of love. Elle.
Thanks for all you are doing for all of us with EDS!!!!!
You're so brave to do this but make sure you are not being taken advantage of and are properly compensated. I hope to see you have a proper treatment or cure in the following years. Also I know I am echoing sentiments already shared but you're genuinely so wise and strong to put up with what you do and be gracious enough to share your life with us. Thank you! Wow.
So happy to see you again and I hope this finds you doing well...much love 💗
Heya Cheyanne you amaze me always have you’re such a true warrior princess! 👑 so glad you’re getting more answers I always thought instinctively that you had more going on than just your EDS & IF etc. Well done for being part of the research it can be painful and uncomfortable at times! keep fighting your way through with love & prayers from the UK 🇬🇧 💚🦓💚🦥💚🦓💚xx
I just wanted to let you know that I continually lift you & your family up in Prayer!! I hope your able to get more answers so that they will then help you decide & proceed w/what steps you take next. Your so courageous!!
Are they able to compensate you for the clinical trial? Or are they helping to pay for your travel and accommodations at all?
10 years is a long commitment, but you are helping others in the future and will hopefully learn more about your genetic conditions during the study! 📖 You're very brave and intelligent. I enjoy watching your videos ❤ Stay strong 💪 and stay safe!
Typically if you are accepted by the NIH your care and accommodations, while there, are covered.
I got Lyme around 1983 +/- a year, not diagnosed until June 2013. I started having symptoms of Leaky Gut around 1988. If my LLMD Doctor hadn’t diagnosed my Lyme in 2013 I’d be dead now. My diet is long grain brown rice, wild rice and Classico Tomato and Basil to mix it together. I usually have a cucumber a day but I can eat other vegetables. I can’t have a lot of fruits but I can have oranges. I drink coconut water, water and I rotate from chicken to lean beef with the fat squeezed out as I cook it, then sometimes Turkey but it makes me tired. I occasionally eat salmon which is expensive. I sometimes eat gluten free Lentil chips with potatoes or The Good Crisp Company potato chips, but potatoes are on the list of foods that give me problems. I deal with inflamation and if I’m in a Lyme disease flare up I feel like the wind is knocked out of me if I have any sugar. Plus I lose strength in my arms. It’s been quite a challenge with family for a long long time telling me to stop faking it and do something with my life. I’m not even sure yet if they all finally understand the food intolerances. I come from a family who are smart and have very strong opinions. I don’t often reach out to talk to my 5 older brothers. My Doctor was urging me to take treatments for the Leaky Gut but I put it off and I don’t remember what brand of medicine it was for that. My brilliant LLMD Doctor died from Covid October 15th 2021. He was a healthy 71 years old prior to Covid.
Glad you are at NIH. My friend worked there for years. Research in fungi. She’s so smart. Now works at big Univ med lab. Had very early info on covid. Best of luck
Sending Prayers to you and your research team 💕
Best wishes to you on this leg of your health journey!
Very interesting and articulate explanation of the medical issues you have faced. Perhaps this research trial will be extra beneficial for you. Let’s hope so.
Oh honey I’m here for you zebra sis💕 I hope you get answers so they can tweak everything like Goldilocks
I’m not sure if you’ve done a video on how you and Silvino each deal with your illness? I’m constantly in and out of hospital. And after awhile I feel guilt of my husband having to “take care” of me. ❤️🇨🇦😘
yeah idk, How many other people did they find with that type of compound mutation? I have been around the Dysautonomia community for decades now and I have seen and heard more than all the Dysautomia experts combined. I have seen thousand with EDS, Autoimmune Dysautonomia, Mitochondrial Disease Dysautonomia, Infectious Disease Dysautonomia and so on. Your immune problems and your gastrointestinal problem are not unusual, I just think that for other patients it’s not being documented well at all. No one is producing studies let alone case studies on it. There is a very large % of EDS people with Autoimmune disease and Immunodeficiencies. Just like Mitochondrial Disease people. There are even many with EDS, MITO, Dysautonomia and MCAS with gastrointestinal disease. So to doctor, especially at the NIH who know extremely little about Dysautonomia it may seem like they discovered some new mutation when in fact they haven’t. The question is that if there are 10 other people with the exact type of mutation you have and they don’t have Dysautonomia, EDS or MCAS? I suffer from very similar problems to you but my breathing is much worse and so far doctors haven’t figured it out. My gastro problems were believed to be dysmotility inertia but on 4 day emptying study my motility was on the fast side closer to dumping syndrome. But my real problem is that when my intestines fills up my HR increase 30-50 beats and this triggers breathing attacks. Also my pelvic muscles tighten. I believe a compression is taking place that the intestines are pressing on an artery. But I am too worried to travel like you do because of COVID. With my breathing attacks and uncontrolled tachycardia I would not handle it. Hospital can not help with my breathing attacks in any way. So I’m stuck. With my breathing problems and heart/bp issues no one wants to do even minor surgery on me. I have had giant nasal polyps for 6 years now and so I havent been able to taste, smell or breath through my nose for 6 years. Anyway maybe the surgery will help anyway regardless if it is caused by the mutation.
Yes, none of their other cases have EDS, MCAS, or dysautonomia. It is two separate issues. I have identical GI and immune manifestations to their other TTC7A patients. There are about 8 patients with my exact variants and ~80 with TTC7A mutations in general. I, unfortunately, just have EDS and it’s comorbidities too. There are several other EDS/MCAS/POTS/GP patients in my area and my local team did additional genetic sequencing because of the differences between my phenotype and their other EDS patients.
Keep in mind that I do not share everything. There are key diagnostic criteria and whole exome sequencing to confirm these diagnoses.
But I do agree that EDS and it's comorbidities do need more research, and I am so sorry you are struggling with it all too. I wish you the best!
Girl you are sounding sooo good though!
At the end you were talking about respiratory issues, i have recently begun CPAP, due to restrictive lung issues…
🙏❤️
Love you Chey 😘
If u can make the talking volume higher. Your channel is awesome but I have to turn down the music and up when your speaking. Thank you and keep fighting.
I have much of the same as you do, my miracle medicine is compounded ketotifen fumarate, for it acts primarily in the bowel, coating it so it can heal lesions and the like.
It's a hundred year old antihistamine that works wonders on the GI tract, the only other thing is Quercitin, which changes the expression of your genes for the better thre liner you're on it.
I hope this might help in the off chance you've never tried them. ♡
Hang in there, my fellow #HealthWarrior & #Spoonie. You're an inspiration and have a great personality. ♡
I have already tried both. Most of my intestinal issues are due to mutations in the gene TTC7A and not mast cell related. But thanks for the suggestion. I am glad you have had success with both of those drugs!
🙏🏻🙏🏻🙏🏻
How are you able to travel without having mast cell reactions? I was having to go 4 hrs each way to see my dysautonomia doctor, but had to stop because about 1.5 hrs into the drive I'd start having mast cell dystonic reactions every trip up there. Now I can't be in a vehicle for more than an hour without reactions.
I don't necessarily have MCAS, though. Definitely have Hereditary alpha-Tryptasemia, but not sure if that includes MCAS or not at this point.
Very nice
rarer than rare girl
How do you get in? My family needs to go! ASAP. I have one child who is failing.
This might be a dumb question but I'm wondering if what you have I curable? Are all these test and procedures done to help cure you or just to help you maintain a sense of normal. And will you have to do all these test for the rest of your life.? Sorry I'm just curious about all of it. I find it so inspiring how happy you arm despite what your going through.
🍀♥️🍀♥️🍀♥️🍀♥️
妳跟我一樣都很👍哦樂觀面對……♥
Why do you not wear a seatbelt? What was in the big white boxes? Can you simplify some of the terminology as can be confusing at times
I’m guessing because it goes directly over her Hickman. I don’t wear mine properly because it’ll hit my port site
Have you ever tried glycine in free form, glycine is needed for all these genes within the gut to work properly and function
I don’t understand anything in these videos. Maybe because I’m not a doctor or nurse.
i HAAAATE having pulmonary function tests. the rapid breathing part you were doing is the worst
YES!!! It had been years since i had PFTs, but they are sooooo intense.
@@HospitalPrincess I hate PFTs with a passion! My pulmonologist's office has the patients not do any Albuterol or rescue inhalers before doing them and my asthma always flares up right before the test, EVERY. SINGLE. TIME! But by the time the test is done, my lungs realize they don't need an Albuterol or DuoNeb treatment lol. My next PFT is October 18th with my Fasenra shot for my eosinophilic asthma.
Are you not an adult? You act like a child patient ..?
I am hoping you do not mean this in a negative way. Of course she is an adult. I think you can tell by the way she understands the medical side of things. I doubt a child would be able to explain the medical mutations the way she did.
She is definitely an adult. She has a degree and she writes for a medical journal. I feel like this comment is a bit insensitive.
Entrance to hospital said Children so I think that is the question