Ehlers-Danlos and Brain Tumors
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- Опубліковано 27 сер 2024
- An update on my health including my pituitary tumor, pineal tumor, autoimmune disease and a rare disorder called Ehlers-Danlos Syndrome. Comment if you have any questions and I will try to answer. Thanks for watching
I am 67 and did not get my hEDS diagnosis until I was 54.... Glad you got yours early.
You amazing girl! How you deal with so many serious, life-changing illnesses and remain as thoughtful and kind as you seem to be is utterly mind blowing. You have an old soul, sweetheart, and that it is probably why you are so intuitive about health and why you are handling all of this with such dignity. I feel so humbled by your post...here I am, 60 yrs old, and crabby because my knees hurt. You don’t deserve any of this, but you don’t act bitter or angry. I know I would never have been as noble as you at your age! I just feel sad that I cannot help you in some small way! It’s one thing to get treatment for your body health, but getting treatment for your mental health is quite another. I know you mentioned in a past video that you have a wonderful mom who supports you 100% and lots of good friends. Be sure to lean on them whenever you feel overwhelmed, afraid, sick or sad. And fight any urge you might get that tells you you’re a burden to any of them, because nothing could be further from the truth. I’m absolutely certain they are as inspired by you as I am! I hope you are able to enjoy the upcoming holiday season to the fullest, and I hope and pray 2018 is a MUCH better year for you!💕
Thank you so much! You help me by just listening to my story and being kind to others.
I'm so glad that you felt well enough to post this video about your health! It sucks to be sick, especially when it is an invisible illness! My issues started in my early years too... well, early to me! Now, more than two DECADES later, I am finally fighting tooth and nail for an accurate diagnosis! I saw a neurologist who suggested Ehlers-Danlos hypermobile type and when I learned about it, I was floored by how well it fit me and my life. But, when I pursued the issue on my next visit, I quickly found out how hard it is to get a doctor who is willing to go on the record to actually be the one to say "yes, this is what is going on with you". I'm begging for imaging and genetic testing (to rule out other forms) to confirm the diagnosis, so I can take all of the evidence to my general practitioner for the diagnosis. So, considering my dislocations started around 13 and I'm 44 now, it's a lifelong struggle just to get to the point of diagnosis, much less to get to treatment for all of the issues that go along with it and the co-morbid illnesses. My point is this: it is GREAT that you got your diagnosis younger than me, so you can take the precautions to keep your joints in better shape than I have. I keep saying "if only I knew...". I've subscribed to your channel and hope that you can feel up to making more videos here soon. I found you from the Zebra Network facebook page, thank you for sharing all that you did there as well and I am so sorry for the loss of your Dad
Kristen & John So interesting to hear you found me on the Zebra Network Facebook page! I had no idea I was on there! It is hard to have EDS because not many people have it or understand what it is like. I am lucky I got diagnosed young. It is thanks to my mother who has never given up on helping me. I hope you are getting the medical help you need to live a full, happy life! Thanks for your support!
Two of my children have Ehlers Danlos Syndrome. It’s tuff getting diagnosis and harder finding specialist consultants with knowledge. Having a syndrome means the multi symptoms they have. I wish you all the best. Please please do your physio daily it will help somewhat
I just found you tonight. I suffered a brain hemorrhage and I know other people who are going through other serious conditions. It helps me to listen to other peoples' perspectives. Thanks for sharing... You're very pretty. Peace.
Ed Janston Thank you and best of luck to you on your journey to healing
Strong woman right here
The Anxiety Guy Thank you! I don't view myself as strong to be honest because I struggle with anxiety, but I think I am too hard on myself. I appreciate your support so much!
You look good girl!! Sick or not, you're beautiful inside and out! Thanks for getting awareness out, so maybe more people will step out of seclusion, because we suffer in silence so often, because like you said, it's an invisible disease sometimes.
Thank you
You're amazing girl! I appreciate your strength your positivity you'll get over all illness,,, just make yourself happy and out of stress as it increases brain health and let your body fight this with all immunity.
Sweetheart, I hope you are doing well. You’ve been through so much at a such a young age. Sending you most positive and healing thoughts ❤️
anastasia chuykina Thank you so much for your support! It means so much to me.
Thank you for explaining EDS so well. I'm a fellow EDSer and am encouraged by your strength.
Casey Alphonse I'm so happy I can encourage you! You are strong too- just remember strong doesn't mean perfect. I have bad days too where I feel really anxious or sad. You can be strong and still be human! Best of luck to you
@@hermionepink96 those are some words of wisdom right there " you can be both strong and human. "
Will continue to pray for your healing and strength 🌹💞💪🏻
Hope you survived. your an angel
SON GOKU I am still alive. Going through some very difficult times with my health right now though. I will try my best to have an update posted in the next couple of weeks.
Amazing strength . Thank you for the update and the explanations. We appreciate the information on the illness.
Edward Sy I'm glad the information is helpful. It is the entire reason I open myself up like this. Thank you for the support!
Very well done Marissa. I have EDS and several of the comorbid conditions you mentioned. Most don't realize all the conditions that are caused by the mutation in our collagen. Good job at sharing!
God bless you Marissa, you are truly an angel here on earth. All my gratitude and prayers to you!
Wow thank you so much! I really appreciate your support.
Continued prayers 🙏🏻 hope you’re doing well
Callie Cooper Thank you so much for your prayers!
You are such a sweet young lady
I will pray for you
Love from Canada
Despite everything you've been through you're looking gorgeous! Was great to hear from you again :)
Thank you for your support!
I totally relate to not having the strength to share what you're going through on the regular. But when you do post, know that these videos mean much more to many of us than you know.
Greengage 27 I'm really glad they help others! Thank for your support
That's wonderful news =) I'm so happy for you!!!! May God keep you healthy from now on. Stay positive and strong as you've been doing so, God bless you baby girl
Thank you
I’m so glad your tumors are getting smaller/gone! And I hope you start feeling better with your syndrome and that you can be happier and healthier. You are so strong and have faced so many hardships and honestly you can overcome anything!💖😘
Catalina Silvestre Thank you so much for those kind words! I really appreciate your support!
I am glad you're doing okay
I hope you did not give up and are much better now, don't stop fighting
Learten I will never give up!
My heart goes out to you. I do hope so much you feel alot better in yourself. I have just watched your videos about your health,, i am so praying for you to be better. And we all do hope you manage to do another video soon,,, all the best.
Hey, hope your ok, thank you for taking time to reply. I so hope you will do some follow up videos soon, when you can , all the best.
Maybe, but it will probably be awhile. I still don't have a lot of energy to do things. I'm glad you enjoy
You are one of strongest woman I've seen in my entire life, I was about to give up on myself because of this disease but I'll fight until I win this battle. Thank you☺
mtuseni brendon I am so happy watching this gave you the strength to keep fighting. No one fights alone! Healing energy your way!
Hope you are doing well! I admire your strength. Not everyone in your situation would still smile and be a positive person after going through all that you have. It takes real strength to keep going when times aren't ideal and it's truly inspiring to see it.
Ryan Mulligan Your comment means a lot to me! I try my best to be positive and laugh because it helps me cope, but I am also human and I am not always positive and smiling. I have hard days too! Thank you again for supporting me- it means so much to me.
It’s crazy to me how many people have EDS and I’ve only heard of it in the last few years. There’s HUNDREDS of videos of people who have it which is insane!
I know- kind of like ALS which the ice bucket challenge brought a ton of awareness to all of a sudden.
I wish you get better girl. I am sending you good vibes from Brazil.
Gabriel Spohr Thank you for your support and well wishes!
Prayers for you 💖
hey .. its so good to see u marissa... thanx for keeping sharing about yourself.. praying for u always.. u are a wonderful soul!! i am a medical student . and u motivate so much to learn even more ... the most High Doctor will take care of you.. :) love u
Shefin Mathews Thank you and good luck in your studies
Prayers are always sent your way lady!! You are so amazing! I've seen some strong people but I've got to say that you are the strongest I've seen! You amaze me with how you have such a beautiful face and a look of full of life as you explain everything! I am so inspired by You! I too have some of the exact things going on with my body and if I can have half the courageous soul that you have I know I'll make it through. I'm so happy for you that your tumor is in remission and I will be praying that it stays that way so you don't have to have surgery! Please keep posting updates when you are feeling up to it because you are helping so many people girl! Love and prayers 100% your way! Thank you for your videos!!!
Loving Dale Wow thanks so much! I am so happy when I get comments saying that I inspire or help other people. It gives meaning to what I am going through. I wish you good health!
Wow so glad that your tumors are going into remission!!! :) I have a close friend who also has a brain tumor and the doctor's aren't too sure what to do. She just found out that it isn't cancerous though so that's super exciting!!!
Just liked and subscribed. I hope you're able to post more videos soon! I'd love to know how you're doing.
Rachel Grace Thank you so much for the support! I am very happy your friend's tumor isn't cancerous! Brain tumors are funny things though how even benign ones can cause serious problems depending on where it is. Hopefully that isn't the case for your friend! I would love to post another video soon updating things, but have too much going on right now. Maybe in a month or two...
Yes for sure! :) I can't wait to see another update video. Hope you're doing well
Cute as a button and such a brave girl! Thank you for the follow up.
DUNEY issa Thank you!
Praying for you 😘
Move Im niga Thank you!
Hi Marissa, I don't think I'm the only one that's hoping you're doing fine. We love to "hear" from you soon
Thank you for your support! I will be doing an update video soon, but spoiler alert- I am ok, but starting treatment again.
Thanks for the update and good luck with everything else going on! You have this!
I am glad that you are feeling better and I hope that you are doing good
Thank you for the support.
Marissa Anne your very welcome
I hope you are doing well in these days. I wish you all the best. Bye!
Diego Busti Thank you
Sorry to hear about your health, girl. But you are lucky in one respect for sure - and it's your natural beauty and incredible cornflower eyes. I bet you can beat Kristina Pimenova there. Please post more pictures of yourself because looking at beautiful faces makes people happy. And it is bound to make you happier by making others happier.
Thank you so much!
Thank you for sharing your story. You really are inspirational, and you have an incredible personality. I hope you are doing well, and would love to see an update.
I am so glad you find me inspirational. Thank you so much for the support! I am planning on doing an update soon.
Also, as far as herniated disc goes, if you can, you might want to consult a good chiropractor on this (there are few that I know are really good, but I don't live not even near them, unfortunately, but you might...).
P.S.
You should upload more videos, an update on your health, progresses hopefully, etc. Although I do understand that you might not have the energy and/or concentration to do it... Get well, my friend.
Thank you so much for your support! I have often not felt very great especially with my new treatment again. I am planning on dong an update video soon when I get the chance. In terms of chiropractors, my doctor told me they are not safe for people with Ehlers-Danlos Syndrome. Thank you again for your well wishes.
I love you so much 💕 you are so strong ❤️I hope you are fine now
Hi Marissa how are you doing? you are such a strong girl and in my prayers xxx
Oh no not more sickness, I really feel,for you, you are suffering so much, every art of your body, bulging discs I know about, but I exercise a lot and that helps
Having your joints dislocate , that’s sheer hell, I wish I could help,you , a couple people on here are saying about eating well, green smoothies, no sugar, we have to keep our immune system in top condition, to fight any disease, please try it, I follow so much on natural health , and some documentaries have the top drs from the top hospitals and universities all agreeing on this
I send lots of hugs to you that this is the end of your troubles, so sad, you should be out enjoying yourself, let’s hope they find some sort of cure xxx🙏🏻🙏🏻🙏🏻❤️❤️❤️🇦🇺🇦🇺🌹🌹🌺🌺
Pat McGaw I try to eat organic fruits and veggies and have been eating more natural things and taking supplements. I personally think the pesticides and chemicals that get on so much of our food and that we breathe is not good for us. Thank you for the continued support- I really appreciate it
Strong girl 😍
Never give up
I won't
Hoping you're well
Mimi Pool Thank you so much! I hope you are well also!
@@hermionepink96 so happy to hear that...hugs from Seychelles
🙏🏼✊🏼💕❤️ keep keeping on beautiful, sorry your in pain I do know how this feel 🙏🏼❤️💕 keep you in my prayers glad to hear the tumor news! Xox
Remy Remss Thank you!
I pray for you to get through this :]
Bunny Thank you so much for your prayers for me! It means a lot to know strangers care enough to pray for me!
Hi Marissa,ive been following your news since last year,so sorry to know that.For your info im from Borneo island,survivor from the pituitary tumor( benign) sorry for my bad english but i would be greatful to share on personal message if u like,regarding the tumor topic that ive been through since 2015.
Lex To Thank you so much for supporting me! I am sorry you had to fight a pituitary tumor too. I hate the word "benign" in terms of brain tumors. No brain tumor is "benign" because they all can be life changing or life altering. I would love to hear your story!
I hope you get better
Turtlehats32 Turds Thank you for your well wishes!
Sounds like what I have been going through all my life! Small brain tumour, EDS of numerous ileals. Aneurysms and a dissected aorta and a new heart valve.
I am sincerely so sorry anyone has to go through this. Sadly it appears it was passed down in some ways to my kids. Mast cell issues to beat the band.
Kevin Redman I am sad to hear that you and your family are experiencing a lot of the things I am too. It is hard, but I try to focus on the lessons being ill has taught me and take things day by day. Sending healing thoughts your way.
Good for You sweetie
I am praying for you.
Ah, so many things happening to you?.. Plz stay strong and may God be with you, all the health problems go away.. Eat lots of oranges, drink some warm tea. guarantee they will make you feel better..
Thank you
How are you doing Marissa Anne????????? 💕
I am okay- I will post an update video as soon as I get the time. Thank you so much for your support, it means so much to me.
Would love an update , hope you are well
Hi dear,, how r u now???
I will be doing an update soon! Thanks for the support
@@hermionepink96 update ?
anony mouse Yes! I have been saying I will be doing an update for months now. I have it scheduled on my calendar to film it sometime in the next week. So if my health cooperates, an update will be up in the next couple of weeks. Thank you so much for caring about me!
Stay strong!💖
Mí Májszelf Thank you!
You look awsome ;)
About auto immune diseases - check out Dr. John Bergman's videos on this topic - some times (many?) the mainstream medical system categorizes as "auto immune disease" conditions caused by lifestyle choices (diet mainly).
Just so you know another perspective on this topic...
Hi, try to eat only organic raw food, nothing else. It will help for sure!
I try to eat organic and anti-inflammatory foods as well. Thanks for watching!
mri report n syndrome report.how u r still alive with all these? May God bless u
Did the tumor come from eds? I also have eds and wondering if the two are linked
Z Money I don't think so. My doctors don't think they are related. We have a lot of cancer in my family.
How are you now ? Are you ok ? Hop everything is great for you
I will be posting an update on my health soon. I am still alive, but things are very hard right now. My health has taken a turn for the worse.
I wonder why people with a ehlers danlos have allergies.i thought it just affected the connective tissue.as well, I am hearing that people with ehlers danlos can be prone to anxiety.i wonder if it is a more complex illness than we know.
It is a very complex and systemic illness, conective tissue is everywhere. You can find info at ehlers-danlos.com
I think people with any chronic or serious illness are prone to anxiety! At the cancer center I get treated at for my brain tumors, they told me almost everyone struggles with anxiety. I have no idea if people with EDS are more prone to allergies or not. Thank you for watching my videos and supporting me!
Are you alright, I constantly have headaches in one particular part of my head should i be worry?
Yes I am okay! I don't know if you should worry or not because I am not a doctor. Everyone is different- most people who have headaches don't have a brain tumor, but if it concerns you, please check it out with a doctor! Best of luck.
Hughes and kisses, all the love there is in the world sent to you😍😍😍😍😍😍😍🤗🤗🤗😍🤗😍😍😍😍😍🤗🤗🤗😍😍😍😍😍😍😍
Thank you so much!
Update? I want to know...
Potatoe Yes, coming in the next couple of weeks. I have been wanting to do one for months, but haven't been in a good place so I didn't feel like filming. Thank you for caring enough about me to want an update'
Marissa Anne ty for letting me know and I hope you get out of that bad place and get to that good place soon
Potatoe Thank you so much! I really appreciate the well wishes
Thank you for taking the time. your videos give me hope. Do you have a public Facebook account?
I'm so happy I give you hope. That is the best compliment anyone could ever give me. I don't have a Facebook account.
You might want to change your lifestyle, my friend, as a preventive measure. Mainly change diet. Let me know and I'll link here more info about what I'm talking about.
You’re born with it!!! Educate yourself.
Garlic! Mexican remedy!!!!! it works!!!
hope your doing welle
Thank you I am ok
Does eating collagen powder help?
Poor thing! Just be careful with all these diagnosis because sometimes when doctors don't know what it is they just diagnosed a disease.
Oh yeah I totally get that! At the beginning of our search for answers, I was "diagnosed" with fibromyalgia without having any testing done. It is an easy label to slap on people if you don't want to actually try to figure out what is wrong!
❤Brave❤
how are you my dear,big hugs
Have ever seen courtelizz1 she make brian tumor look like it's the end of world don't get me wrong I'm not saying it must be horrible but she makes it so look so dramatic
faze king3156 I don't know who courtelizz1 is and I have not seen her posts. Please have compassion for her though as every patient with a brain tumor diagnosis is doing the best they can not to mention there are so many types and variations with symptoms and treatment no one person has the same experience. We all have rough days- I have days where I am overwhelmed with anxiety and cry or I have a horrible headache and I can't function, it's just I choose not to always show the personal moments like that. Thank you for watching and supporting me!
How are you now ?
Rukshana Begum Struggling a lot with my health right now. I will be doing an update very soon if my body lets me film and edit a video!
How do I know if I need to get checked for a brain tumor? I have some of the symptoms and I’m worried but I don’t want to go get an MRI if I don’t need one?
Hope it’s important, you should always make sure.
If it worries you, I would probably just get a MRI or at least talk to your doctor about it. They didn't think they would find anything on my MRI, so you never know. Either way, I believe you will be okay! Best of luck to you.
I have a prolactinoma and im so scare of the surgery :(
Aimé Pérez That's totally normal! Just take life day by day and try not to think about it all the time. Easier said than done though. Maybe find some things to distract yourself like art, puzzles, reading etc. Hope your surgery goes well!
How are you hunny
How are you doing now?
I am ok. I just restarted target therapy pills because my brain tumor was not totally killed by the first treatment I did. I hope you are doing well!
How are you doing?
microspect Hanging in there- I have had another major surgery since this video and started some new treatments. Thank you for asking!
Have you tried eating healthier? No pizza, sugar, bread, etc. Buying a juicer and making green smoothies? Could help. Good luck!
Valken yep, stopping eating pizza is going to cure her brain tumours and genetic disorder!
I have always been a pretty healthy eater with the exception of eating too many chips sometimes! It won't cure a tumor or a genetic disorder, but I think healthy eating can make you feel better! But you have to have pizza or indulge sometimes ☺️
How are you doing Melissa ?
I meant Marissa!! 😀😀😀❤❤❤
Hanging in there- going through a rough time right now, but trying to make the best of it! I will post an update video in the next couple of months hopefully!
Marissa Anne praying for you and sending you thoughts of positivity and healing.
RIP she died this morning:(
V Santa Actually, I did not die. Where did you hear that?
@@hermionepink96 Hi brave sweet girl how are you doing? You are in my prayers..