41 Comments

  1. I know it’s a little late and I didn’t know which video to do this on, you probably won’t see this comment anyway but here it goes. Happy cerebral palsy awareness day y’all, March 25th is national cerebral palsy awareness day, and I would make my day if you showed your green in support

  2. I totally feel you on the "see the geneticist" for the diagnosis" and then having another Dr for treatment. I feel like it's similar with mental health. The psychiatrist and psychologist thing.

  3. Good luck Jaquie! Oddly my health journey seems very similar to yours. I have future Mito testing, my doctor plans on me getting a port due to bad veins and I have absorption issues, so I have IVIG in my future, saline infusions, iron infusions, and probably lactated ringers too.
    It helps to watch your videos, because it gives me some idea of what I am in store for.
    I've also learned a lot about advocating from you, so thank you so much for all you do.
    My illness count is getting high too. It can be intimidating and frightening.

  4. Have you ever tried the nutrition supplement Spectrum? I am new to the mito disorder community and this is one thing that my doctor wants to get me on. I have heard great things about it but it is pricey, but if it will help me I think it would be worth it, plus it is ok to go through my J-tube.

  5. Is it possible that your mutations aren’t a medical disorder? Like isn’t it possible that many people have mutations that doesn’t lead to issues?? I had thought I had learnt that?

  6. What is the name of the geneticist you are seeing? I too was diagnosed at Mayo by Dr. Atwal, but I really need the blood work to determine or rule out the vascular type EDS.

  7. If there's a site on mito illnesses you like for educational resources, what is it? Best to you, Jaq! Looking at a geneticist at UCLA for a work-up bc chronic illness.

  8. Not trying to be rude but when you are in a flair are you able to make Judd something to eat. When im in alot of pain from my pancreatitis i try to make my wife something to eat most of the time i cant. How do deal with this problem?

  9. I was just watching a video about videos that went viral in 2017 when I recognise Harlow bringing you ranch instead of water when I got the message that you uploaded a new video😂👍
    I really enjoy watching your videos and they help me learning english a lot, so thank you

  10. I hope that your journey goes well and that you get good information! At 6:15 you said you would put a link in the description to a resource for Mito. When you have time, could you do that? I am interested in reading about it.

  11. Loved Judds story, would love to hear more stories from him, he tells them so well!
    Good luck with the geneticist, I’m early on the road to finding out if we can the genetic route of all my problems x

  12. My mom was one of 2 people diagnosed in the world with a rare form of Muscular Dystrophy called a Carnitine Deficiency. That was 20 years ago…
    I'm glad to see that you are able to live your life to the fullest.

  13. Old navy has compression leggings that are amazing for Orthostatic Intolerance if the weather allows!! Also, I’m excited for you doctors visit. I’ve seen some thought online that mitochondrial disease could be linked to ME. So many of the answers you’ve gotten have helped me get diagnosed 👍

  14. My insurance does not cover genetic counseling so I can’t get confirmation if I have EDS unless I pay out of pocket. I did do have mito in MTHFR which is typical for people on the spectrum. I did out of pocket genetics for medication reactions and also for nutrition as I felt those are important and have helped. I want to get into NIH and research studies. I also have PI and want to know if there is a genetic aspect which I think there may be from 23 and me run through livewello. Jaquie do you think you will ever go to the PI conference through IDF? I look forward to the conferences each year to learn more about my immune difficulties.

  15. How can you do a feeding tube bag portable like that? My sister has to have hers hanging up because we don't use a pump and just use the bag directly gravitational into her tube. We used to use the pump until the company changed the manufacturer of the bags on us and we weren't able to get kangaroo bags anymore. Its difficult when the insurance changes from something that worked for such a long time to a more cheaper product that's difficult to use. My dad has had a few break open because he cant close the top of it tight enough. Being on medicaid/care we kinda get pushed aside on medical products and things she needs for her CP. We're lucky to get her supplies delivered on time before they run out. Living in Florida things have been hard to get certain waivers approved. Watching your channel it seems so easy for you to get what you need jaquie. I only wish more people could get the same kind of treatment.

  16. wow how much is a specialist over there that driving 8 hours and booking a room in a hotel overnight is cheaper than paying for an appointment without insurance 😱

  17. I feel you. I have a mitochondrial syndrome and only 7 people have it. It’s to blame for ALL my symptoms and diagnosis (just like you, theres a lot) . It was only discovered about 4 years ago but thanks to new research it has an official name and papers are being published and more and more is being learned, it’s amazing how fast it all can happen. I have hope that they will at least know SOMETHING new when you visit. GOOD LUCK!

  18. Hey Jaquie! I'm not a geneticist, but I do have a masters in molecular biology and genetics and I'm looking into a doctorate project in human genetics. From the little I know about mitochondrial genetics, there's benn A LOT of advances in the last few years, including a paradigm breaking discovery in heredity (turns out they come from our fathers too!). I hope you find out more about your body as to help your health journey, and the new doctor is helpful in that!

  19. Hello. I have been having some pretty unusual health issues that are somewhat similar to yours after being very healthy for long time. Like you, I was and still am very suspect of the whole "I don't know" answer from doctors. Investigating on my own, and from living close to the Mexican Border, I think I might have found a possible cause. Despite this, the doctors still seem reluctant to say or do anything definitive. I wanted to share some of this info with someone in a similar situation. It may or may not help but could be worth a try. I can be contacted at ([email protected]).

  20. So happy you are feeling better, always glad to see you get out. Does you medical team ever make you diary to look back and examine objectively in a medical way your flare ups? If so what exactly do you and they do and can you share that? Praying your check up with your doc on your mito issues goes well and sheds some light for you.

    Some key points for folks to keep in mind if you do not know-
    Genetic issues-we are all born with a set, how easily they turn on in our lives depends on the insults life can place on them, from pollution anywhere, chemicals like meds and vaccines, foods that are not good quality-over processed-don't agree with us- poor lifestyle there is a myriad of reasons but we will all get some reason at some point and yes some of us are more prone, good news is we are discovering how to turn them on and off and sometimes as easy as changing lifestyle or adding a certain lifestyle, like most Americans do not eat healthy fats nor have collagen in their diets and so many in the medical community argue over such things making it harder on people to figure it out and please remember one should always exhaust natural means before considering any artificial means or drastic surgeries- see here for resources-https://www.ted.com/topics/genetics https://www.ncbi.nlm.nih.gov/books/NBK19932/ https://ghr.nlm.nih.gov/primer/howgeneswork/geneonoff https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)31268-6/fulltext?dgcid=raven_jbs_etoc_email

    Mito issues-https://my.clevelandclinic.org/health/diseases/15612-mitochondrial-diseases
    Anything in our bodies can be affected at any time, scary but can also provide answers and solutions so like Jaquie never give up and keep moving forward, remember it is about the journey, so be safe, be good, be well, be joyful and find the love in it along the way, of course, share = caring, blessings!

  21. When you started talking about it (i'm just calling it "it" because I have no idea how to spell it😂) the first thing I thought was "the powerhouse of the cell" .. and I only know that sentence because of american tv shows 😂😂

  22. Hey Jaquie, I am looking to move from Iowa to Florida. I have hEDS, POTS, and a whole host of other medical issues. I was wondering if you knew of any resources in the greater Orlando area that helps disabled people relocate. Thanks, Allyssa.

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