Collagen supplements DON'T help EDS...here's why
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- Опубликовано: 7 июн 2020
- CAN COLLAGEN PEPTIDE SUPPLEMENTS HELP EDS (Ehlers-Danlos Syndrome)???? Let's examine this using a COL5A1 mutation, a classical EDS mutation.
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The views expressed in this video are my own and do not reflect the views of Mount Sinai Hospital.
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WHAT’S EHLERS-DANLOS SYNDROME?
The Ehlers-Danlos Syndromes (EDS) are a group of more than 13 genetic connective tissue disorders that affect the joints and ligaments, blood vessels, gastrointestinal tract, and autonomic nervous system, among others. The most common type of EDS is hypermobile EDS (hEDS), which used to be known at type III. Some of the most common symptoms and co-morbidities of hEDS include chronic joint pain, joint instability and dislocations, dysautonomia, and GI tract dysmotility.
MORE INFO ABOUT EDS:
🧬 www.ehlers-danlos.com/eds-types/
🧬 bit.ly/2N95xTE
MORE INFO ABOUT POTS:
💓 www.potsuk.org/what_is_pots2
❤️ cle.clinic/2p1lByR
MORE INFO ABOUT GASTROPARESIS:
💚 mayocl.in/2BRQTuR
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:
🤍 bit.ly/2MLUYXI
FTC Disclaimer: This is not a sponsored video.
As an Amazon Associate, I earn from qualifying purchases. 
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I’d love to see a vid on EDS on the biological level!
I explained this to a friend once. I told them that I have defective collagen not a collagen deficiency. So if I take collagen supplements my body just produces more defective collagen.
This is a brilliant and simple way of wording it👍
Well more defective collagen might be better than a lesser amount of defective collagen - if that actually happened. But I'm not convinced it does that either.
yes, I agree with your point ....I have always had the same genes but didn't always have arthritis, mitral prolapse and keratoconus , maybe and this is only a maybe even though I had defective collagen in the past I had so much of it that the issues described above didn't manifest .
If that is true maybe increasing your defective collagen so it approximates the amount you had when you are young is nonetheless beneficial...
Yep, exactly. People often hear a word and just run with it without understand. Same goes for autoimmune disease. I have multiple rare autoimmune diseases. Some people just hear the word "immune" and they think I need to "boost" my immune sytem. No, I don't have an immunodeficiency, I have immune system dysfunction. It's different.
I stopped taking collagen and my pains increased. It wasn't due to placebo, because I was taking it just to prevent wrinkles lol. Im diagnosed with EDS.
Best explanation I’ve seen, thank you! Reminder for anyone taking collagen supps: they’re arginine-heavy & viruses love/feed off of arginine. So important to limit your arginine intake.
Great video Izzy! People ask me this all the time and I usually say something like ‘in EDS, the body’s genetic code (i.e. DNA) for collagen is faulty, so simply adding collagen peptides won’t cause your DNA to start coding collagen correctly. An analogy could be like baking a cake- adding the right ingredients still won’t make the cake if your recipe (i.e. DNA/genetic code) is wrong’ I just made up the analogy part on the spot, but I basically just try to describe it as simply as I possibly can
Awesome analogy! I love analogies tehehes... Thanks for sharing! :)
likeabunnie thank you! And you’re welcome!
I feel silly for believing it all these years, like if I just tried the right thing or ate the right foods 🥲. Was in a bit of denial.
Like baking a cake without the eggs 🍳
I had to leave a comment, because many, many women I know, had bladder sling implants, and because they caused constant infections, they were given Cipro or Levaquin or other antibiotics. Many have told me, years later that they have connective tissue disorder. Levaquin had lawsuits against the manufacturer, but most were given generic Cipro, so they weren't allowed to file a lawsuit for their injury.
They were told they inherited this disorder, but we put two and two together, to know for certain that it was Cipro. My own daughter had a terrible reaction to Cipro and all it took was eleven pills in five days, and she suffered nerve issues in her legs and she couldn't walk. It took two years and a lot of supplements, before she was back to normal. Years later, she has been going through menopause and has been suffering awful, lower back, hip and other pain and is in agony.
After going through everything, we have put two and two together and now she is taking this type of collagen. It's going to be a constant in her life to feel better.
I hope this helps others understand that antibiotics they have taken years before, may be the reason for their pain.
Doctors have no idea that these drugs are dangerous, and even with a black box warning on these drugs, doctors still prescribe them and women still take them.
I hope this helps someone who is going through this.
Sad but true
Well, even if collagen supplementation will not change the "faulty bulding process" of some one with Ehles Danlos, theoretically maybe it still could reinforece the existing structure to some degree.
In a compiled meta-analyse consisting of 10 different scientific studies of additional collagen-supplementation of healthy individuals, they all showed with-out exception that collagen-supplementation led to increased thickness and srength of ligaments, muscles and tendons.
So it still may be worth trying for a Year.
Thank You for a great and very important RUclips channel !
Keep up the good work !!
All the Best !!!
Per
I took collagen pre EDS diagnosis, in an attempt to help my joints and gut...it did absolutely nothing. I studied nutrition and all my classmates were raving about their amazing experiences with collagen, and were completely baffled when it did nothing for me.
THANK YOU SO MUCH for making this video. I have wanted this myth explained to me for months, and this is the best exploration I have seen.
Yay I'm so glad to hear this!!!
I took it for 5-6 weeks and if it helped I couldn't tell. One thing that has really helped is prolotherapy. A mild irritant (dextrose/sugar) is injected into the overly floppy joint and it causes the joint to tighten up. My insurance covers it (in California) and it is administered by a physical medicine/orthopedic doctor. My SI joint is so much better, I am going to see if it will help my hips next.
Thanks so much for your videos, Izzy. You have been like a good friend throughout my journey with EDS over the past year.
I'm so happy prolotherapy helped you! I've heard some others say it has been helpful!
I am glad you have had success with prolotherapy. I had a couple prolo injections approx 30 yrs ago when I lived in another state. Now I am back living in my hometown area in So Calif and am interested in trying prolotherapy for my SI joints. Would you mind sharing the name of your orthopedic dr?
I love that you explained the science involved using words most people can follow! Thanks for being on here. You are a life line
Thank you fir doing this video! I’m at my bffs house now and she’s a big fan of collagen and always suggesting I take it to “fix” mine- this helped her understand finally!!
Yes...BUT...it's not like EDSers collagen is completely useless...it's doing some good things in ones body. So I see no reason for not taking the supplement if one finds their diet lacking.
I love how you explain this so anyone can understand! It is so informative
thank you!!!
Thanks so much for making this video! We've seen stuff for collagen and wondered! Thanks for looking into this and breaking it down! You rock! :)
Thank you so much for this!!! Everyone has been telling me to take collagen for my EDS (and I can't because I'm allergic to alpha-gal (red meat products)). This made me feel so much better about not being able to take it. Thanks girl.
Amino acids might help with healing and joint fluid, but not a doctor. I was wondering about this specific thing, as I have been in beauty school as well as becoming a cma, women believed it was really helping their skin. I am worried about crunchy hips and screwed left shoulder. So far just a PT said I am hypermobile, recently found out that I have a tarlov type of cysts on tailbone area, cyst in my shoulder, and fell upon this disease, which is often the cause of tarlov cysts; and now after a few days watching your videos, sure I’d pass the biten test, checked my bpm and it is like 74 laying down and 120 standing, within 2 minutes, then back down laying down. So far I’ve started eating soup more often and bam, I can move around and not feel like food is inching up my esophagus! Thank you for your videos! I am at least feeling less shame as job after job employers yelled at me for being too slow, lazy, whatever, and I truly might have this condition, I might have pots... I am not Dx yet, and look forward to it, but so far how many times my heart rate spikes 30-50 bmp higher, from laying flat-to standing, everyday this week... would love to get started on a better diet and maybe some meds. I ALWAYS thought it was just low blood sugar, I was always yelled at for eating slowly or not enough (ironically overweight now, but when I eat full meals now, I couldn’t before, my stomach has just stretched, but I still feel like I cannot move for about 4-5hours). Salt was my addiction and my 20s I was soooo focused on kicking it, being “healthier”... now I’m glad in school I was told to go ahead and eat more if I have low BP, it has clearly been helping me with this not well know illness, I might... have. I would black out so much when I was walking everywhere in college, in dance and yelled at “eat more!” I was eating... I sure wish this was more well know, I had a check up in my early 20s, wore a heart monitor and sure enough I remember the doctor saying he noticed spikes, but... it was “nothing”...”it happens to a lot of people... you just have hypoglycemia, eat more...”
hey there. cool video, thank you so much. been off a while thanks to a couple of wicked flares and some other less pleasant issues. hope you’re doing well, thanks for all you do. gonna share this with some of my friends.
Wow Izzy I am so proud of you and the research you did to make this video! I hope you are still studying genetics because not only were you well informed but you helped the ordinary person understand how this all works and/or doesn’t work!! Bravo 👏🏼👏🏼👏🏼love it !! Xoxo stay well and hope you’re keeping safe in the city, I think and pray for you often!! 🙏🏼😊💖
Thank you so much Darla! Yes, I plan to apply for genetic counseling masters in the fall!!
That is amazing to hear Izzy!! I truly think it’s your call and you will do amazing things in your field❤️xoxo
Thanks for the video about Kollagen .A friend of me is Fitnesstrainer and he told me to take some Aminosäuren. But I explained him that I have a mutation and it doesnt Funktion. now I send this video to him so he will understand it more good ;)
It works on joint pain that I can attest to
Ohhh, good to know! I'm currently awaiting test results for EDS and I am most definitely on the hypermobility spectrum at the very least. I've been looking into various supplements to see if they help my symptoms, so now I don't have to waste the time and money on collagen. Thanks!
Awesome video as always!!
thank you!!!
I avoided taking collagen for a long time because I’ve heard it doesn’t help.
I finally started taking it after a bad cut on my thumb. Wow! In two weeks my joints and dislocations started feeling so much better.
I limped around for 7 years due to my pelvis pubis and sacroiliac joints not fusing back together after having a baby in 2016. In two weeks my pelvis started to heal.
I took it for years for a skin condition I have and stopped just because my financial situation changed and it's not cheap, my skin issues got so much worse right away and my EDS symptoms got so bad I finally ended up getting diagnosed. I truly think it helped me and I'm hopping back on the band wagon. Cheers.
I use the straw to build a house analogy (their house/collagen is made of bricks and my house/collagen is made of straw), you could give me more straw to build my house with, but the fact is, my house is still made of straw 😂. It’s not magically going to turn into bricks one day.
On another note, I spent a lot of money on collagen induction therapy for my face and it did nada 😂. It’s supposed to stimulate new healthy collagen but as you know if your collagen is faulty, it’s not going to miraculously come through all healed and looking amazing like it would, with a person with normal collagen. It came through as my normal faulty bad collagen.
No idea why I thought it would work given my wounds and bruises don’t even heal normally, but anyway. Have also tried a million different supplements and products, and obviously none of them worked 😂.
Now I’m more educated, I’m skeptical of anything collagen boosting or anything that claims to ‘repair’ collagen, at least in relation to anyone that’s a Zebra.
This was super helpful. Thanks.
That was explained perfectly, thank you. It's a topic I've been thinking about for a while and now understand why it would not be beneficial. I guess I'll just have to age gracefully x
I'm so happy to hear this! Thank you!
Super interesting video!
So I’m not ARGUING with you, as I certainly can’t prove you wrong, but I might suggest that perhaps this may be over-simplified. In my own example, I’m a 42 year old male with hEDS, and up until about two years ago I had basically no symptoms-I’ve lifted weights, climbed mountains, and worked with my hands my whole life with only two or three non-severe dislocations in all that time. It’s only recently that I’ve started having pain. Now, I accept that I don’t produce ideal collagen, but up until this point, what I’ve produced has been fine. My genetics haven’t changed. So, perhaps I’m now producing less collagen than I once did, and thus am not healing at a rate that keeps up with wear and tear. I wonder if, in my case, collagen supplementation might help, not because I have EDS, but because I’m middle aged. A neighbor swears up and down that collagen supplementation helped her tremendously, and while we might assume placebo affect, she tried a few different MSM/Chondroitin supplements and also that relief factor stuff and they didn’t help, so I’d guess if she was prone to placebo affect they would have worked. I don’t know, just thinking out loud.
Bone broth powder it's in that
your muscles can compensate for loose joints to an extent, staying fit helped you. Your collagen levels fall with age so its hit a critical point.
@@laurastevenson9380 yes this happened to me you think college n or high dose vitamin c
@@laurastevenson9380 I highly recommend you check out TheFibroGuy (I would link it but don't think RUclips will let me--just look it up as one word like that, you'll find them). I've been working with them for several months now. Their approach to hyper-mobility is a predominantly neurological one, mapping the body with the brain and becoming more proactive vs reactive in movement. My pain is not gone, but probably 70-80% improved. I'm much stronger again, and really only my first and second ribs continue to give me much trouble, but even those I've learned to reset and am better at holding them in place. They're expensive, but compared to the money I shelled out for supplements and other treatments it wasn't out of line, and far more helpful than anything else I've tried.
This is so very interesting!! Your inspirational
Great video based on facts. Collagen supplements have been around for decades in various forms. There's a reason they've all remained classed as 'nutiritional supplements' and not pharmaceutical medicines. There's not any solid scientific evidence or consensus that collagen supplements can do what infomercials and network marketing companies claim they can do. Benefits are commonly similar to placebo.
Hi I have Ed’s pots hypotonia dyslexia heds apraxia EOE low bone Density you have helped me be my aware by the way I am only 10years old and I. Have all of thoughs diagnosis some of my teachers just do not understand but my nurse at my school has pots but I also have a feeding tube AKA g-tube have you ever experienced when you do activities you feet or hands get EXTREMELY hot I get that 10 times a day it’s because your blood is stuck in your hands or feet and literally at school I have PE every day I can’t do PE so I can’t participate in PE of field day of field trips and I miss tons of school because of my issues and I have to ride the elevator and it is so hard social because no one else knows what it is like so I just don’t open up about what I’m going though with anyone because i have been bullied so many times and I’m very emotional I have anxiety and depression and know one can relate with me I don’t have any one to talk to and it’s like know one has any idea how hard it is to live with many disability’s. I struggle with being social because with all my disabilities when I tell people,people are like is it contagious and when I say no almost all of the people do not believe me and I hate having disabilities that are invisible and if teachers ride up the elevator with me and don’t know what is wrong with me it is hard because someone else that is in my home room has to ride in the elevator with me and other teachers that aren’t aware of what I have ask who is hurt and both of us will say neither and I will say I have pots (postural orthostatic tachycardia syndrome) and they are like what does that mean and I say I don’t know.
Thanks for making these videos, I really needed some in depth information about hypermobility syndrome! I've been struggling with a lot of pain (in my hands especially) for over eight years now, and no doctor has been able to understand why. I saw a reumatologist recently and was finally told that I have hypermobile joints (which explains why I'm in so much pain). I have a question though! If you see a doctor in the US (I live in Norway), and ask for help with hypermobility, what advice do you get? I was basically told that there is very little documented science about hypermobility, and that "nothing really helps". My only hope is to find a physiotherapist who has experience with hypermobility. I just worry that because I live in such a small country, there is very few people with similar problems - and therefore very little knowlegde about it. Kinda frustrating! Keep up the good work :)
We get the same response here from some doctors that are not informed, that there isn't much you can do. Do your own research and then compare it to what is happening to you, for example, you were better when you did not take a certain type of birth control (may relax your ligaments and cause more movement). Some people find help with massage, physio, acupuncture etc. Find a doctor that is willing to learn.
@@tinakam8557 occupational therapy followed by slow strengthening and stabilisation of my hands and wrists really helped me. DM me if you want specific info/videos etc.
I am totally interested in the pathology that causes. :-) thanks for the video. Great information! I have taken collagen collagen peptide supplements for the last three years and I just got diagnosed with EDS. I was and am taking them because of my hair skin and nails. It has helped me with stronger nails and my hair loss. I have noticed no other benefits from taking it for the last couple of years. :-) I didnt even considered taking it to benefit my eds lol.
Which collagen supplements do you take? I have EDS too.
@@ashlynmartin6181 I use Root Vitaliy collagen :-)
Wow thanks for this video. I’ve had 2 people suggest I take collagen supplements in the past few weeks. I know they won’t work (my doctor said they wouldn’t help EDS at all), but now I know why they won’t work.
Thank you, very helpful!
Great video!
This is totally not about this video but I was laying here doing my nails and wishing for another video of yours. Your voice is super calming to me. Relaxing goodness. And I learn stuff. I keep wanting to start about vlogging about my hEDS, and just kinda never do. Lol
That of of taken alot of work and research to make... you make GOOD content.
Thank you!!!
I hav EDS and this was super helpful! Thank you =-)
Rachael Elizabeth healed all of her conditions, this was just a small part of about 9 with the carnivore diet and brain retraining
Giving me more building materials does me no good if my blueprint is faulty.
Any idea why taking the collagen supplements would make me super sleepy immediately? I have Col5 and Col3 mutations (diagnosis so far hEDS).
I have EDS I have been trialing collagen peptides for the past few months I thought it might do something I hoped, I knew it probably wouldn’t, due to reasons Izzy spoke spoke about but I thought what the heck I’m desperate so I tried hydrolysed collagen specifically, apart from making my skin more soft stretchy and velvety than it already is, and having better hair and nails it does very minimal for joint pain or anything else EDS related, to be honest as a supplement I’ve had better success with high strength fish oil with higher EPA concentration than DHA overall for joint pain and brain fog but again it’s marginal I feel better taking fish oil apart from bruising more easily due to its natural blood thinning effect than not but I can not take the collagen even at high doses and not notice much difference in way of EDS again when your body can’t absorb collagen properly due to a mutation you can have heaps of it, unless someone can figure a way to alter or replace a missing gene it won’t have much effect 🧬 collagen supplements are largely ineffective in my personal experience- most vitamin supplements are useless to you unless your deficient in them plus so much variation from quantity of actual product from company to company, before trying any supplements always a good idea to speak to your doctor in my experience
my doctor said that massive doses of collagen supplements might improve some symptoms in people with hEDS. He reasoned that some hEDS might be caused by collagen processing of some kind and taking more might be helpful. I was like lemme see the literature lmao
Hej Izzy, do you heard about the Cusack-Protocol? It recommends about 12 supplements which work positive for EDS. What do you think about it? There is a Facebook group if you want to inform you about it... I am not sure having hEDS but definitly HSD and I have been using most of the supplements since one year and feel better. By the way: nice channel - you are great! Best wishes from Germany :)
I have Classical EDS type two and I doubt that it will help! It would be great if that was the case, but it’s not going to happen! Thank you, Izzy for sharing this with me! Someone tried to tell me about collagen supplements, and I know that I am not sold on that! That’s what this person says that it would help with: uh, nope that is not going to help me at all: I have EDS !
What about a different supplement like glucosamine, msm or chondroitin??
Hi Izzy.. I had to pause your video at 2:41 to say : *YES. I am interested.*
I make my own broth and it seems to help me, but I think supplements in general are overvalued.
The collagen work if you are just hyper mobile?
I honestly hadn't heard about the collagen supplements and EDS. For me, and I'm not a medical professional at all, I found that Tumeric and Omega 3 supplements I just feel better as a whole throughout the day. Granted I also exercise daily so it could be that, but I found them to be a big help for me. And that's what I'm kinda figuring out with EDS, is it's kind of all about what works for you. At least in my opinion.
Since taking fish oil my chronic knee pain has almost disappeared. Omega-3s are amazing.
Is Cusack protocol helpfull??
It helps some joint pain in my knees
It helps me to with stiffness and pain.
I can't really function without a high protein diet, so I put vital proteins in my tea, smoothies or apple sauce to get my protein when I can't eat a full meal, especially on days when I have a migraine or my teeth hurt too much to eat solid food! It never makes me feel full, but it does seem to help me function better. I certainly wish it helped with EDS, I'd take anything I could get if I knew it would help!
Im opposite
N ut i do plant protein
Collagen protein isn't a good source of complete protein. You may want to consider eggwhite protein powder, which is much more complete in its amino acid profile. Pea protein is one of the most well-balanced sources of plant protein, but not as well-absorbed as animal-derived protein.
What's your opinion on the medication reglan???????
Interesting love it
Hey. So I have Hypermobility, but I have never dislocated any joint, and I don’t have stretchy skin. Can it be EDS? I’ve had 2 pinched nerve. 1 is carpal tunnel and the other Sciatica, both affecting my left side. I live in Kenya, Africa, and we have no specialist dealing with EDS.
Thank you❤️
This youtuber actually has a video going through the criteria for Hypermobile EDS on her channel! She linked it in this video. You don't have to have stretchy skin to have hypermobile EDS, and dislocations aren't strictly necessary. The section for dislocations is "1) chronic widespread pain for longer than 3 months; 2) daily pain in 2 or more joints for longer than 3 months; OR 3) recurrent and/or spontaneous dislocations." So technically, you do not have to have dislocations to have EDS. You also could have something called a Hypermobility Spectrum Disorder which is similar to EDS. Hope this helps!
Riley Hartmann thank you so much. I really appreciate this. I’ll look into the Hypermobility spectrum disorder. ❤️
@@shadoww248
Can you please explain even more of the science behind this!!!
For sure!!
@@IzzyKDNA I legit hardcore cried when I was missing a bio class prereq for genetics! I am now going into nursing but know it will not be actively spoken about!
I get no money for a caretaker So a have to pay it for my father has a little help to care for my children to cleaning my flat to go to the supermarket and to make some food for us. i am so angry about that everybody says Germany has the best social system. but the social system doesn't work for people who has EDS. I have this very strong gastroparesis I just can I eat something after taking my Cannabis that I have to buy for myself.
I live upstairs, but can't walk the stairs...so I am always Home,since november....at the moment I really wouldn't be unhappy to die (i wont force it)
So essentially? Is my body, for lack of better words, feel more “aged” ??
Is it okay if I share this video?
yes of course! please do, I'd love that :)
Ugh, now I know why I've spent hundreds and hundreds on collagen, with no noticeable difference. I just discovered I think I have this last night after coming across your video, and I'm 49! Where do you get the genetic test from?
a lab! a geneticist would decide if they want to have u tested and they can take blood and send it to a lab.
I didn't knew I had EDS four thirty seven years. The doctor's always told me that I'm healthy and I should do more Sports cause of my Hyper mobility and my weak muscles. I did every Sport you could imagine Football, horseriding,turnen,Thaiboxen abd jogging. Of corse i injured very often and often. I did hard working .we had to carry twenty-five Kilo ore more. nowadays my hands are so in stabil that i'm only able to the shower with my bandages on and I'm not able to walk any longer. The German doctors must become Better in EDS. For the people getting their diagnosis earlier than when their have athrosis and you nee a wheelchair. The medicines are too dump here. We have not as good neurochirurgs as in the USA and that frightens me very much, because my HWS und BWS are instabil, too. The BWS ist no problem I can't put it to the right place for myself, but my neck is killing me. One day I will have to operate it. but the last two operations on my ankle has damaged it more than before(now I need a wheelchair ) we don't have a good Chirurgs in Germany :'(
I think you're channel is so inspiring and all your content is informative and a pleasure to watch!! You've actually inspired me to start my own channel all about dysautonomia & pots. It would be great if you could check it out :)
Thanks for all the hard work you do for us all!
I'm surprised to hear about 3 strands uniting when DNA consists of 2 strands, doesn't it? Thank you for making an effort to counteract bad claims.
Bert Visscher yes! Dna is made of two strands. What I’m showing here is the amino acid sequences (or polypeptide chains) that the COL5A1 and COL5A2 code for. So what I’m showing isn’t the DNA but rather the amino sequences made by the DNA, since DNA codes for amino acid sequences (together these sequences make a protein). Hope that clears it up a little bit! 😁
I know that dont know.
Fellas withs EDS, what supplement has helped you?
Hydrolysed Collagen peptids will also act as a signalisation pathway.
As mimetic of joins injury.
A part of the peptids pass directly in Blood stream and not firslty processed by your liver.
(My english is approximative but not my nutritions knowlledge.)
Dépends of the sort of supplément you take.
Very small Hydrolised peptids have not the same effect than Collagen you have in food like gelatin or meat.
You mean for pain
did you inherit your EDS from your parents?
from one of my parents
@@IzzyKDNA did they present the same symptoms as you, or were they not visable??
Need closed captions!!! Not understand her.
Thank you, one less thing to waste money on.
Ah yes. Just like speaking more slowly in English does not make it easier to be understood by a person who only speaks Mandarin.