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Do You Have A Rare Disease? | Probably Genetic's Mito Testing Program: An interview with Lukas Lange

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Visit bit.ly/3tftPif for more details and to take the Symptom Checker Survey to determine whether you qualify for a free test.
Feel free to reach out to Lukas, the cofounder, at lukas@probablygenetic.com. I am also always available to share my personal patient experience. ⁣
*The clips in this video were edited for length without compromising the spirit of the interview.
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Опубликовано:

28 авг 2024

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Комментарии : 37

@CricketGirrl Месяц назад

I just had this done. The genetic counselor was outstanding. While the test didn't show mitochondrial disease, she encouraged me to seek out a muscle biopsy due to my symptoms. Now, after years of illness, I finally have a way forward. So grateful. ❤

@laurachickadee6969 2 года назад

I got some answer's,thank you Cheyanne and Lukas,

@chelseahartslief1372 3 года назад

Lukas is so knowledgeable! He did an interview with me but unfortunately, their kits are not available in South Africa yet. Waiting patiently. He is really amazing

@mannabythemountain1598 3 года назад

Thank you so much for sharing this information with us! 🥰

@xevsetter1201 3 года назад

It helps me stay hopeful to see people who are passionate about their work. Thankyou for sharing.

@HospitalPrincess 3 года назад

I hope it is helpful!

@xevsetter1201 3 года назад

@@HospitalPrincess did the first part and met the criteria is now waiting to see but they say in the next email. It's exciting and scary at the same time.

@cieluphantomhive2405 3 года назад

I matched with the qualifications! Im the same age or slightly younger than you Cheyenne. Hope to get some answers, many doctors near me unfortunately keep turning me away due to fear of my age and treatment bc of it. Thank you for the information and video on this, I had no idea people online can reach out in these ways to help find diagnosis and tests :) Im 22 living in NYC, much love and well wishes to you and your family as always🙏🌟

@Dulcimerist 3 года назад

Sorry that doctors keep turning you away. I experienced that a lot when I was younger and wasn't diagnosed properly. Which symptoms are the worst for you? Hoping you can find a good team of doctors to help you.

@HospitalPrincess 3 года назад

I just turned 24, so you are just a couple years younger. I hope this is helpful for you. I am sorry you are unable to find a team of doctors who are willing to investigate the origin of your symptoms. Lots of love to you. xoxo

@cassiethomas4045 3 года назад

Thank you so much!!!! I just applied and this is gonna be a serious miracle diagnosis if its made 🙏🏻

@missluciddreams3472 3 года назад

I have lupus 💕 much love to u and yours

@HospitalPrincess 3 года назад

💕💕💕

@ricardoandmiffy6889 3 года назад

you Ar a good lady

@HospitalPrincess 3 года назад

Thanks!

@louisemacdonald9345 3 года назад

Very good news

@HospitalPrincess 3 года назад

Yes, good news!

@timothydexter106 3 года назад

Does this test check for EDS? thanks

@twentyfourinvest 3 года назад

You're so cute, and smart! I'm praying for you and your family. Watching all your videos.

@louisemacdonald9345 3 года назад

Aww so cute doggie

@HospitalPrincess 3 года назад

He's the cutest! We love our Teddy Graham. 💕

@Dulcimerist 3 года назад

I have hypermobile type Ehlers Danlos syndrome, which has symptoms that are often mistaken as a mitochondrial disease or fibromyalgia.

@HospitalPrincess 3 года назад

Yes! Actually, many with mitochondrial disease are also diagnosed with hEDS and/or hypermobility. Being that low muscle tone is a common sign of mitochondrial disease, there is not enough muscle to support the joints and that causes the joints to become looser. There is definitely a connection. (However, we were able to rule out mito for my particular case).

@Dulcimerist 3 года назад

@@HospitalPrincess There's also a lot of similarities between mitochondrial disease and a rarer condition that causes low muscle tone called myasthenia gravis. Perhaps that's why EDS researchers decided to try, and have had success with, treating EDS symptoms with the myasthenia gravis medication Mestinon. It also treats gastroparesis and orthostatic intolerance in other health conditions. My doctor put me on it for my EDS issues, and it's helped a lot.

@HospitalPrincess 3 года назад

@@Dulcimerist I am so glad mestinon helped you. I tried it...no such luck lol. But I hear it works wonders for some. :)

@Dulcimerist 3 года назад

@@HospitalPrincess Sorry it didn't help you. They had you on the standard 60mg 3x daily? Hoping they can find something else that can help you.

@cotyart270 3 года назад

I might actually cry if I qualify for this. Mito runs in my family but my mother won't get tested and they won't test me because I have an EDS diagnosis. I would love to finally finally have an answer.

@amandaanderson8254 3 года назад

I took the survey prequalified just waiting on an email.

@HospitalPrincess 3 года назад

Cool beans! You should hear something after the review period. :)

@williamfatherof4877 3 года назад

did you get the test?

@amandaanderson8254 3 года назад

@@williamfatherof4877 I qualified for some cardiac genetic testing. Not what I was actually looking to get tested for. But that was what I ended up qualifying for.

@GLGC688 3 года назад

Took the survey and I had a lot of symptoms on the list. Just got results back last week positive for Hereditary alpha-Tryptasemia, so I wonder if that is why?

@HospitalPrincess 3 года назад

Sorry about your new dx, but glad they found your mutation!

@Not_a_snake 3 года назад

Took the survey and prequalified and now waiting on an email.

@HospitalPrincess 3 года назад

You should hear something after the review period. :)

@williamfatherof4877 3 года назад

did you get to do it?

@Not_a_snake 3 года назад

@@williamfatherof4877 I did not. They only emailed me like two weeks ago to tell me. The email did say something about something to come in the future. I actually talked to my neurologist and there’s a company called variant XY that is doing the same sequencing and their patient assistance program is pretty forgiving. If you make under $50,000 a year you can get the testing for free and if you make more than that it’s still quite cheap. I should be getting my results any day from them.