My Life With Parry-Romberg Syndrome 

Thank you for the kinds words. I really do appreciate that. And I'm sorry that you're also suffering from PRS. Just gotta try our best to stay positive through it all! :)

How are you managing it?

Здравствуйте у меня тоже такая проблема вы можете номер вотсап дать чтобы связаться свами?

Hi! Thanks so much for reaching out and for your kind comments. I can relate to the crippling fear and anxiety upon finding out about this disease for the first time. It can be a LOT. My heart definitely goes out to you. The positive thing is that many people with the disease will have minor cases. It's best to just take it slow and keep monitoring any progression. Researching doctors in your area who may be knowledgeable of the disease is also helpful, though much easier said than done, I know. Sending love to you and your daughter as you navigate this!

Thanks for your message, Declan! I'm glad that this video could be of help to you :) Don't be afraid to reach out if you ever need anything

It is also interesting to look into causes of conditions which attack the body, since my experience with hemifacial atrophy I have been making sure to get adequate nutrition, vitamin d3 for example helps to regulate the immune system, and k2 can help reduce inflammation and protect cells from oxidative injury. I would also suggest watching intake of anti-nutrients found in certain foods as for some people, these anti nutrients such as lectins have been shown to contribute to leaky gut and inflammation, which are both linked to autoimmunity. Again, just sharing what helped me : )

Hey Monica! Those are great points to keep in mind. Definitely taking note of those vitamins - thank you. I'm glad to hear that those have helped you in your journey!

Hi there! Oh my gosh, that is so kind of you. I am honored that I could help give you motivation in life!! That's seriously like the best compliment. Hang in there! I know the journey is super tough sometimes, but we will get through it together!

Hey there, Elizabeth! It's good to hear from you. Thanks so much for your kind words. It means a lot. I'm sorry to hear that you also have to deal with PRS. And from such a young age too. I hope that it hasn't been too rough for you so far, though! Sending you lots of positive vibes!

@@BrianDahmsCreative I think it will be a good idea if people with PRS make a group to know more about it, since theres not a lot of studies about it... in my case I know I have it because Im a doctor and searched by my self cuz during my growth ive been going to a lot of doctors without getting a diagnose. Today Ive have two surguries

​@@AliciaSantosDoctoraHi, I would love to start a group with you if you're interested. I just got diagnosed a month ago. I'm not a doctor, but I'm obsessively good at doing medical research. I already have a lot of information to share. For example, in one study I read that oral vitamin E and pentoxifylline slow down and stop the progression of deterioration. In the case I read, it took 10 months for symptoms to stabilize.

Hi there! Thanks so much for your kind comments, and wishing all the best to your daughter 💜

Hi Nanumi! Thanks so much for reaching out! Being the recipient of your first youtube comment is a great honor :D I'm so glad you were able to find this video and that it could help inspire you to talk to your doctor again about surgery options. Wishing you all the best in your endeavors!

You are so welcome! That touches my heart that this video will be waiting for him when he’s old enough and ready. 🥺❤️ You guys can always reach out if you have any questions down the road, or just need someone to relate to.

Sujata Talasila Hi there! Thank you so much for sharing your story with me. I'm really sorry that you have to go through this as well. I know that being positive is hard, I go through my phases with that as well. I try to focus on just how incredibly unique we are and that kind of helps :) You're definitely not alone in this! It's really nice to be connecting with you guys through this platform, and know that we're here for support as well. Sending you lots of love on your journey!

Hi there, Erikah. Thanks so much for your kind words! I appreciate you taking the time to reach out to me :)

Don't worry about it as it ll stop about 26 i have too

Hi Howard! Thanks for reaching out and sharing a bit of your story with me. I’m glad you’ve found this space because you definitely are not alone in this! 💪🏼 Sending good vibes

🥺 Thank you so much

I agree! You’re beautiful and amazing, Brian!!!

Aw, thanks so much, Tiffany! I'm glad this video was able to reach you and give you some comfort after being diagnosed. I know it can be pretty scary, but finding others who can directly relate makes it a bit easier. :) I'd love to hear how your surgery goes if you do decide to have one!

Aw, thanks so much! That's sweet of you. I'm really glad you found a surgeon that could help you out, and that you're feeling more confident in yourself. That's so important. Wishing you continued good health and confidence on your journey :) And no need to apologize. Your English is wonderful. I could understand everything.

Bri-Nick I'm glad too, because, when one side of my face was losing fat year by year, and evryone was like: Hey, do you know, that your face is asymmetrical?, I was confused and ashamed. Now(thank God!) I'm finally like everyone). Thanks, I'm trying to learn English, I understand everything, but have problem with talking and writing). When I listened to your story, I decided to write you, so you would know, that you not alone, and some people can completely understand your feelings; ) P.S. I will try be confident no matter what)

I can relate. I don't like when people point this stuff out...as if we didn't notice ourselves, lol. And you seem to be doing a great job with English. Keep up the hard work! People who learn it as a second language don't get enough credit. It is a really difficult, and confusing language.

Bri-Nick I will) Every and each of those, who pointed it, thought that they opened America to me lol)

Aww, thank you so much! I'm so glad that this video reached you, and that it can provide your family with a little bit of comfort! I know how scary it can be, but there aaare options out there to help with the symptoms. :) Sending warm wishes to you all on your cousin's journey!

Wow, that's amazing! Glad to hear you're doing alright. Thanks for sharing your story with me, and hope all goes well with the next surgery!

Aw, thank you so much for reaching out to me Celia. That's very kind of you to say. That's great to know about your sister, I hope that that continues for her! Sending love and good vibes to you both!

Hey Jacob! Thanks for sharing a little bit of your story! You said that it affected your teeth? What happened there? I hope that things are better for you now after your surgeries.

Bri-Nick Well my teeth look better now than they did. It was essentially an overcrowded mess on the right side, so there have been fixes. For example the average person has four bicuspids fitting between each pair of incisors. On the top half I only have 3 bicuspids there, and they fit perfectly between them. Hopefully that gives you some idea what they looked like before. Also I do not know if this is the case for you, but the right side of my tongue was also affected.

Hmm, that's really interesting. I have noticed that it's moved into my lower lip, but I thankfully have not had any major oral issues. At least not yet. Knock on wood...

Thanks so much Sara! I hope that your experience with Romberg's hasn't been too rough. Sending you lots of good vibes!

Seth Raposa Hey Seth! It’s good to hear from you. Hopefully things haven’t been too rough for you. If you ever need help, or someone to talk to, know that I’m here! :)

Seth Raposa I have this too :’(

Thanks so much for your support Lenora!

Bri-Nick You're so welcome! Thankfully life is treating me pretty good these days! 💜

Aw, well thank you! That's very sweet. Working on some new vids currently! Stay tuned :)

Thank you so much, Mrs. Opitz! As are you!

That is a good mindset to try to keep. I know it's much easier said than done, and nearly impossible sometimes, but we will get through this!

Hi! I'm sorry to hear that you also suffer from this. I'm here if you have questions or need help with anything!

Hey there! Thanks so much for reaching out! I'm sorry to hear you've also struggled with all of this :/ Do you think you'll try more surgeries in the future? I know it can be super discouraging when they don't quite turn out the way you had hoped. And yes, you're right, we all have to look out for one another! Wishing you the best

Bri-Nick is not that they didn't turn out they way I wanted tbh I think it's probably lingering psychological self image issues kinda like body dysmorphic disorder as a result of have parry romberg syndrome so i think Im done surgery wise haha

Ohhh, I see. I'm sorry to hear that. I hope that you find the strength to overcome it. I know it's super super hard. Looking in the mirror, or in photos can be so frustrating. But we just have to try to focus on all the really great traits and qualities we all have.

Hey there, Arnaud. Thanks for reaching out. I'm sorry your son is dealing with this too. I know it can be really scary, especially when you get news like he's the only one in France with it. I feel like there's GOT to be someone else though. Since posting this video, I was linked to a PRS support group on Facebook. I would definitely recommend you check it out and come join us. It's a great little spot where those affected, and their families, can bounce info off eachother and give support. I know a bunch of people in this group are on methotrexate, so they would be able to give more advice than I would. Hope to see ya there!

Bonjour Arnaud je va assayer te parler dans votre langue .Je suis Quebequois mais anglophone de premier langue. Moi jai besoin de savoir comment faire diagnostic de ce maladie. Les symtomes sont classique . Existe tu des forums ou d autres resources ? Merci beaucoup . My heart goes out to you and your child. What makes it easier for me is that I am 56 and my young adult daughter is healthy. Mes penser et prieres sont avec vous.

@@BrianDahmsCreative could you send me the link to the support group?

Hi @@Esther-qg3ul! So sorry I didn't see this sooner. Here is the link :) facebook.com/groups/2355388300/

Ah, that's really interesting that your twin doesn't have it. You probably wish he did, huh, just so you could have someone there to relate to. The good news though is that waaay more than five people have it. You're not alone!

Bri-Nick I mean that there are only 5 cases of one twin getting PRS.

Ohhhhh, I see. That is really rare!

Hi there! I'm really glad that this video could help you a bit! Being able to relate to someone is so powerful. I hope that everything goes well with your doctor appointment, and that they can help point you in the right direction for next steps :)

Hi Collette! Aahh, I'm so sorry you suffer from this as well. Do you know of any doctor around you that may be able to help you out?

Unfortunately not. I do plan to consult with a surgeon soon. Maybe a cheek implant or fat transfers. I'm not loaded with cash by any means lol. So the struggle is real. I'll be 26 this month and i noticed it around 18. Very awful.

I feel ya. If you have health insurance though, the procedures are covered under some doctors, so that's definitely a huge help. So I would search around. I think even just a plastic surgeon with no romberg's knowledge could do a good job, since the procedures themselves are more generic reconstruction surgeries.

I will definitely do some searching around and see what would be covered through my insurance. I'm glad I'm not alone!

Best of luck with the search! Now you know you always have someone here who "gets it" :)

Hi there! Thank you so much for the kind words! I'm glad that my video was able to reach you. My doctor is Peter Johnson, in the Chicagoland area.

@@BrianDahmsCreative Thank You Brian, my nephew lives in Chicago. I use to be a member of the Rhomberg's Connection and a Yahoo group with all Rhomberg's people, but they have shut down. It was nice just to discuss things with each other , give support and learn from each other. We actually do know more than the doctors because not much has been researched about this. I've dealt with this a long time , but never had the surgery results you did. I won't lie, the toughest years were when I was younger. It does get easier to deal with as you get older, but it is always tough at any age. I wish there was a way to get you my email in case you ever wanted to ask me anything or vice versa. I don't like putting things out here online, especially my email address. Or maybe you are not interested and that's fine too. I've just found it makes a difference talking to others who do know exactly what you are dealing with.

Actually, since posting these videos I was introduced to a Facebook support group for PRS! I joined it and it's actually pretty great! People post pictures of their surgery progress, share their stories, their concerns and struggles, etc. I would definitely recommend checking it out if you can! You can reach me through there, or through Instagram. I believe I have my email attached there.

@@BrianDahmsCreative I applied to be a member of the Facebook page , am waiting for the approval. I didn't even think of looking on Facebook, go figure. Thank you so much Brian, your help is greatly appreciated.

Thank you so much ❣️

@@BrianDahmsCreative A happy new Year for you!

Thank you so much! I appreciate it. And aah, yes, I've seen that one!

Aw, thank you so much. That's really sweet :)

Hi there, I don't know of a correlation between the activation of Romberg's and that vaccine :/ But it does sound like hits to the head have an effect.

Oh gosh, I'm so sorry to hear that. Yes, this lockdown is a really tough time to be diagnosed with this. If it helps any, the progression of this disease is typically verrrry slow, so I wouldn't worry about it getting worse before we're out of lockdown. Stress can be an activator for the disease though, so I would try your best to find activities that keep you occupied for the time being, and then you'll be able to see another doctor once it's safe for us to do so. I know it's hard! But we've got this!! I promise.

Im in the same position ! We got this!

Hey there! Thanks for the compliment! :) As for your question, the more permanent surgery method that I know of is called a “free-flap” procedure. I’m not sure on all the details of them, but they are very intensive operations and used for more severe cases. The results I’ve seen from people often look incredible, but it does come with its own unique set of risk factors. As for natural remedies, I haven’t found anything that’s made a notable difference for me yet. I just try to eat as healthy as I can, with as much variety of whole natural foods as possible, and stay as active as I can.👍🏼

Hi there!! I'm so glad you found this video! I completely understand those feelings of hopelessness. It can be so easy to spiral in those thoughts. But as for some guidance, I'm in the Chicagoland area so that's where my surgeon is located. However, the specialist that MOST people see is in Madison, WI. If you want a pro at this disease, it seems like he will be your guy. I believe I met him many years ago for a consultation, but never went back because of insurance reasons/price. :/ Since posting this video though, I was introduced to a PRS support group on Facebook, and we have people from all over the world in there and someone may very well know of a doctor closer to wherever you are!

Bri-Nick Thank you for the info. I’ve done some research & I’ve come across the specialist in WI and I’ve read up on your surgeon as I saw his name on some of the comments left on your videos. I am in TX so it would be great to find someone closer. I’m willing to travel for help but because of follow ups and all it be nice to find a surgeon who is closer. How do I find the PRS support group on Facebook, maybe I can find suggestions there. Is there a specific name I should look up to find the group?

@@melissa-hdz Oh excellent! I'm glad you were able to find them, but yeah, I totally get wanting to find someone closer. Makes things way easier. This is the link to our group! Let me know if it doesn't work or if you have issues. It's a private group, so it may not link correctly, but all you have to do is request to join :) facebook.com/groups/2355388300/

Thank you kindly for sharing and responding 😊

Hi there! I'm sorry you're also dealing with this. Sending you lots of good vibes! :)

@@BrianDahmsCreative thank u hun. I had fat transplant 3 years ago and now I want anothe Mr one but it's not covered by public health and it's quite a bit of money so I have to wait and save for a long time. Started to think about what u said about progress and now I'm praying that it won't in my case (I'm 28).

Hi Ethan! I'm really sorry to hear that you most likely also suffer from this. But you are way stronger than you probably realize, and this is something that we can get through together!

@@BrianDahmsCreative thanks for the reply. I am in the pretty early stages and it has effected the whole right side of my body before recently starting to act on my face. My parents don’t believe I have it because the differences are so small so that’s hard to handle to be honest

@@JackKnifedJuggernautt I can definitely relate to being aggravated that other people don't/can't notice what we do. On one hand I think it shows that we really are our toughest critics, and that most of what we think may be huge things, in reality most people don't notice. But on the other hand, I want you to know that even though other people may not notice, it doesn't invalidate what you are feeling and going through. From personal experience I've learned to just try to trust in myself more, and do what I feel is best for myself, regardless of other peoples' (friends/family, etc.) opinions.

@@BrianDahmsCreative yeah it’s gonna be rough and I think the most painful thing is not knowing when it will end or if it will end

Melisha Naidoo Oh wow. I hadn't heard about a case where it affects both sides before. I honestly didn't even think that that was possible. :/ Guess it just goes to show how random this disease truly is. I am SO very sorry that you have to go through all that. I can't even imagine. Thank you for sharing your story with me. As for your question, as far as I know fat injections and fat grafts are the same thing. Not entirely sure on it, but I think it's just a difference of word choice. And as for your vision, just keep monitoring yourself. The chances of you going blind are pretty slim. It's more an issue of just vision problems, that could be corrected with glasses or contacts. Try to stay strong! I know it's really hard, but know that you have myself and others here who have been commenting for support. We'll get through this mess. We're tough. Sending you lots of love and well wishes ❤️

I need help with this disease and also live outside the United States do you have any information pertaining to Canada and this disease ? Forums or blogs? Info of any kind would be very helpful. Thank you and may your journey be peaceful.

Hey there Maria! Nah, no worries, it's never too late. I still go through all these comments :) I'm just glad these videos are still reaching people, and I'm happy that this could be a little source of hope for you! Best wishes in everything!

@@BrianDahmsCreative please do make more videos like this and spread awareness. Stuff like this needs to be shared. Now I just wonder how so many people are suffering and hiding because of these conditions. Again thank u and I'm planning to go for a fat transfer surgery myself just because of this video :) stay blessed

That's wonderful!! Keep in touch. I'd love to hear how it goes for you.

@@BrianDahmsCreative I will. Thank u :)

Сейчас мне 27 лет началось где то с 10. лет развивался до 22.лет . до 25 лет нигде не болел но развивался очень быстро и много,пол лица и на теле где то 3 таких все с левой стороны после 25 год начались болит голова и челюсть давит,при кусания давит и не даёт Нормально покушать из минусов только это. Про людей которые говорят что с твоим лицом я вообще не волнуюсь и говорю то что есть пусть они ценят то что у них есть . у некоторых здаровья есть деньги нет у некоторых денег есть здаровья нет у некоторых обе есть и у некоторых обе нет по этому надо двигаться дальше до последнего.молюсь всемогущему Аллаху чтобы у всех было хорошо аминь

Hi! Thank you so much for sharing some of your story with me! I'm so sorry to hear how this disease has affected you. I completely empathize with the struggles you've experienced. It's a difficult disease to live with. In terms of my experience, I've now lived more of my life WITH the disease active than I have without it...which is such a weird realization. I've been fortunate enough to have multiple fat graft surgeries over the years and they really have helped me significantly. Not only from helping to rebuild the lost fat in my face, but also from giving me more confidence. I find your wisdom and positivity inspiring, and I wish you all the best on your journey! :)

Hi there! Thank you so much, and I'm glad you were able to stumble upon my video! Best of luck with your upcoming surgery!!

Hi there! Yes, I chew on both sides pretty evenly, I'd say.

Oh gosh, this sounds extremely difficult. I'm so sorry to hear he's dealing with all of these symptoms. Sending you lots of strength on this journey!

@@BrianDahmsCreative Thank you Brian and be strong. We are New Zealand citizen but we moved to Victoria , Australia where he was treated and surgery. Maybe America's medical standard is better and more advance than NZ or Aus.

@@noelineteaurima8483 hey can you please share more about natural remedy please....even I have it and don't want to go for surgery.Thanks in advance.

Hey there, Andrew. Thanks for reaching out! As far as sleeping, I'm not sure if there's any fact behind sleeping positions having effect on this, but ever since my most recent surgery I never sleep on my stomach, and rarely even my affected side. I do think it could play a role in the progression, but it might just be my superstition, haha. But I figure better to be a little safer just in case.

Thanks Brian. These last four months have certainly been hard but I have found your video very helpful. All we can worry about is what we can control and put our best foot forward. Every problem has a solution and everything happens for a reason. I know these statements are really cliche but they are very applicable to these circumstances. Take care and keep us all posted on your progress.

I'm sorry that people have been rude to you :/ I've found that dealing with other peoples' comments, and trying to not take them too personally, is one of the hardest parts of having facial disfigurement.

Hi there! Sending you good vibes on your journey with this :)

Hi there! How can I try to help?

No worries at all! Unfortunately I do not know of any leads in Canada, BUT since posting this video I was introduced to a private group on Facebook for those that suffer from PRS, and their families. I would highly recommend joining this group because we have people from all over the world sharing their stories and experiences, and you may very well come into contact with someone that has a direct referral for you!

Haha, I've never heard of that analogy before, I'll have to remember that one :)

Hi Fatema! I'm sorry you also have to experience this disease. Let me know if you need any support/guidance!

@@BrianDahmsCreative This disease is so rare that even local doctors don't know what it is.i feel alienated here.I look terrible one sided. My inside out don't match. I feel like another person outside. You look just fine.Don't feel broken. You look handsome from my perspective.

@@fatemajahan3705 I totally understand the feeling of alienation and feeling like you're alone in all this. It took me many years before I was finally referred to my current surgeon. We just have to be patient and kind with ourselves. We have unique beauty, and we have so much value in the world.

I followed you on insta..my I'd is sa_mia_syl. You are living your life like a dream. That's the thing I should follow now.Your video on opening up about this is emotionally a huge help to me.thank you🖤

Hi Lena! That's an exciting step to take! If you're on facebook, I would recommend joining our PRS support group if you haven't already. Chances are someone there will be able to refer you to a surgeon in your general area! I really am only familiar with one other surgeon outside of the one I see, but I know people in our group have some other connections.

Thank you Brian ! But I can’t find that group on Facebook!! Can you send me a link?? And if I have any questions can I talk to you??

Sure thing! facebook.com/groups/2355388300/?ref=share And yes, of course!

Aw, thank you for the kind comment.

Hi Vinod, I’m 27 at this point. I sure hope I’ve stabilized, but I’m not entirely sure if I have.

I think it affected on my hearing also isn't it?

Left part of body is also damaged slightly

What should I do from here

Have you been able to find any specialists in your area?

No, I have not had any kind of speech therapy.