Moya Moya hastalığı ile ilgili bilgi almak ve bilgi paylaşmak için mesaj atabilirsiniz #moyamoyadisease #moyamoyahastalığı
It’s hard to believe it’s been two full months since Miles received his MoyaMoya diagnosis. The pediatric and neurology teams were not giving us real answers regarding what his MRI scan said but once neurosurgery walked in that’s when our entire lives changed. We received his diagnosis from a seventh year resident who had zero bedside manner. When we asked what the prognosis was and if surgery would cure this his words were “No surgery won’t cure this, it’s lifelong and progressive”. I don’t remember much from the conversation after that because I blacked out from panic and fear. Thank god my brother in law who has been apart of a million of these same conversations with these kinds of doctors was there and was able to steer the conversation back to a better outlook. We’ve learned A LOT since then. So much has changed neurologically for Miles. One thing Dr Smith from Boston was able to give us some clarity on was how the lack of blood flow to his right side brain can cause issues and disturbances for his “rational” thinking. If you get to see Miles now he’s so much different from the Miles before everything progressed. I hate it for him because his anxiety is so bad. A tiny speckle of dirt, seeing a bug, eating something that scratches his throat wrong all set him off. Not for hours, but days. He can’t rationally process that he is okay. His fear and anxiety have completely taken over his life. He can’t last 30 minutes at his Lala and papas house without asking to come home because his anxiety gets bad. He’s now having nightmares that abruptly knock him out of sleep into a state of panic and tears. Atleast 3-4 times a week he has these seizing episodes during sleep but once it’s over and I wake him up he responds to me just fine. Getting him out of the house is impossible. Keeping him happy, safe, busy but calm is a full time job and we both work full time jobs on top of it. We are living life hour to hour, everyday based on his mood. We only have 32 days until we leave for Boston and we are praying this surgery is successful and we can get back to some normalcy here in the Langston household post surgery! #moyamoyadisease #milesstrong #prayformiles
오늘 병원에서 혈압재니 이렇게 나옴 진짜 살짝높다. 이젠 모야모야약만 6종류, 당혈압약이 4~5종류. 아침약은 약만먹어도 배부르다. #약먹기싫다 #moyamoyadisease #모야모야병 #희귀병 #우울증 #식욕감소 #체중증가 #반강제적 #바쁨
It was a pleasure to participate at SGPGI Lucknow conference as a faculty for micro vascular anastomosis workshop (STA-MCA bypass Moya Moya disease ). Overwhelmed by the hospitality of the organisers and the knowledge feast. Thankful to the organisers. Inputs from the giants in the field are well noted. Always indebted to my teachers at NIMHANS. Sharing few glimpses of the SGPGI Lucknow conference. #MoyaMoyadisease #STAMCAbypass #Microvascularanastomosis Dr. Dhaval Gohil Neurosurgeon Agastya Hospital Junagadh
2024.4.25(木)22:00〜 インスタで生配信します🐻❄️ 解決しなくてもいっしょの時間を過ごして心が1mmでもフワっとなったらいいな🌥️ 病気の事やお絵描きして自由に過ごしてます。 よかったらどなたでも遊びにきてください。 #moyamoyadisease #もやもや病 #もやもや病の方と繋がりたい #難病
When Ollie woke up after his brain surgery in July 2020, I got to clearly see that my sweet boy came out the other side with that same spunk and sparkle in his eye. I know every day how lucky we are that his Moyamoya disease did not cause a larger stroke in infancy that would have more severely disabled him. I have no choice but to live in constant gratitude for Boston Children’s Hospital and all of the amazing people who continue to support us through Ollie’s medical journey. And yoga? In case it’s not clear what I think, yoga is a life saver. The yoga community is full of bad asses who keep going with love in their hearts, full of faith even through the darkest parts of humanity. Yoga Reaches Out, a yoga-thon at Gillette Stadium, is this coming Sunday. Ollie wants to raise $1K. The overall goal is $700k! Can you help us get there with one week left? ✨link in bio 🧠 #yogareachesout #yogareachesout2024 #yoga #gillette #gillettestadium #bostonchildrenshospital #moyamoya #moyamoyadisease #jtbfamily #jtbstudios #centralmayoga #worcesteryoga #uxbridgema #northbridgema
Minha família é meu alicerce, o amor nos move e Deus nos fortalece. Essa foto hoje representa muito pra mim, ela me mostra que com a fé tudo é possível, que o amor floresce e a enfermidade nos fortalece e amadure espiritualmente. Minha família por muita coisa tem passado mas com muita fé, dedicação, amor, espera e união tem vencido cada etapa, mais forte hoje estamos para continuar nossa jornada. Obrigada Deus por nos amparar e fortalecer, obrigada familiares e amigos por nos abraçar e acolher, obrigada a toda equipe profissional ( médicos enfermeiros, fisioterapeuta, fono, psicóloga) por lutar pelo meu filho e obrigada meu marido por me da colo nesses momentos. Está chegando a hora de enfrentar a segunda etapa e o frio na barriga vai aumentando, um mix de sentimentos vai tomando conta, mas vamos vencer novamente. Tenho fé. 💙 #juntossomosmaisfortes #moyamoya #moyamoyadisease
Update on Tahira: Stanford called & messaged me today. Since she’s still getting headaches and symptoms, her left side bypass is failing, & PCA worsening on the left side, she needs to get more scans done to see whether or not she will be a candidate for another surgery 💔😭 please keep Tahira in your prayers #MoyamoyaDisease #MoyamoyaAwareness #PrincessWarrior #TahiraStrong
World Moyamoya Day is here again.... yaaaaaay How are you celebrating? In New Jersey we are meeting up at a beautiful park in West Orange on Sunday May 5th from 1pm to 4pm. If anyone would like more details, please message me. Reach out to all you know in your area and see who wants to meet up. Whether it be in a park, in a restaurant or just for breakfast at a diner or similar, let's get together and celebrate World Moyamoya Day 2024. Make sure you take lots of photos and post them to the largest Moyamoya support group in the world. WorldMoyamoyaDayMay6th Facebook group. If you'd rather send them to me, I can make sure they're posted and you're tagged. Please remember to add these hashtags when posting on your social media. #worldmoyamoyaalliance #WMA #moyamoyadisease #MoyamoyaAwareness #wmmdm6th #worldmoyamoyadaymay6th #brainsurgerysurvivor #realkealasettle
We are all tired Luna in this house today. Spent several hours after dinner last night in the ER. Bad news: there is a blood clot in one of the arteries in my arm. Good news: The other artery is not blocked! According to the plan, aspirin will dissolve it in a few weeks time. Meanwhile, I’ve still got blood flow to my fingers. Easy peasy. So then we came home, went to bed, the CO detectors went off, made a quick call to 911 to have the fire department come tell us all is well and it’s a new day! #moyamoyadisease #neveradullmoment #whoneedssleep
Before and after: the left side of my head has a new look post indirect bypass surgery. My neurosurgeon took a healthy artery from the outside of my skull and placed it on my brain. The goal is that over the next several months, blood flow will be restored and additionally new collateral arteries will begin to grow to provide even more restorative blood to my brain. #moyamoyadisease #badassscars #moyamoyawarrior
Tänne tullut sen verran uusia seuraajia, joten ehkä olisi esittelyn paikka. Helmin matkassa-tilillä pääosaa esittää Helmi, neljävuotias iloinen ja hyvin päättäväinen tyttönen joka sairastaa harvinaissairaus Moyamoyaa. Matkassa tiukasti mukana myös päälle 40-vuotias äiti Jaana, joka toimii Helmin omaishoitajana ja tämän tilin tirehtöörinä. Mukana menossa myös kaksi isosiskoa ja kissat. Asustelemme pienehkössä kaupungissa Varsinais-Suomessa. Toisella paikkakunnalla vaikuttaa myös isä ja vielä kaksi sisarusta. Tili käsittelee suurimmaksi osaksi Helmin matkaa leikkauksesta johtuvan suuren aivovaurion jälkeen, kuntoutusta, erityislapsen ja -perheen elämää, vanhemman mietteitä omaishoitajan ja äidin näkökulmasta ja myös ihan tavallista arkea kaikkine hömpötyksineen, mahdollisimman rehellisesti huumoria kuitenkaan unohtamatta. Tervetuloa mukaan! 🩷 #erityislapsi #erityisenarki #erityislapsiperheet #erityinensisaruus #erityisenäiti #harvinainen #harvinaissairaus #moyamoya #moyamoyadisease #aivovaurio #kuntoutus #terapiat #vertaistuki
Moyamoya day is May 6th. Received my shirt today 💙 Moyamoya may have its own day, but living with this disease is not a one and done deal. I am so grateful for all the people I have met along the way and thankful for the amazing team at Stanford for giving me a second and third chance at life when I had my two brain surgeries in July 2018 and December 2022. Alone we are rare but together we are strong 💙🙏🏻 I’ll be celebrating this day with all my fellow Moyamoya brothers and sisters 💙 #moyamoya #moyamoyadisease #moyamoyawarrior #moyamoyaawareness #moyamoyaday2024 #stanfordneurosurgery #findacure
¿Qué pasa si se afecta la circulación sanguínea en el cerebro ?🧠🔍 #neurocirugia #neuro #aans #anahuac #moyamoyadisease
Corey and I heard from Boston Children’s today and will get to meet virtually with Dr. Smith next week to discuss his recommendations. Right now the plan will be to wait until May/June timeframe and do an MRI/A with FLAIR and then meet with the doctors in the clinic to discuss the scans and next steps. A week ago I would have been content with this plan but Miles has been experiencing what we think are TIAs or “episodes” and he has had two within the last three days. Because they go away quickly and aren’t classified as a full blown stroke and doctors have a hard time diagnosing them unless they see it in person or on an eeg. Miles’ episodes have lasted no longer than 5 minutes. I’ve only experienced unexplainable fear 3 times in my life, the first time being when the resident neurosurgeon told us Miles’ diagnosis was progressive and incurable and then on Monday and today when these episodes occurred. Miles goes pale, quiet and then immediate fear and panic sets in and he says he doesn’t feel good, that everything hurts and he can’t breathe and then goes into full blown panic attack. After that his facial tick spasms for hours and his chest hurts. As a parent you feel so helpless. I don’t have words because it’s an unexplainable feeling watching it happen. Luckily Corey was on FaceTime with me during both and was able to talk us both through it. Today in the midst of his episode his exact words to me while he was holding onto me was “I wish I could find a wishing well, and make a wish that I was someone else because this is so scary”. I’ve never felt more broken for my child than in that moment. I’m really praying these episodes level out and that we can make it to Boston without any major events occurring. We are only 34 days into his diagnosis and the next 2-3 months will feel like torture waiting but I’m putting all my faith in God because he knows Miles best, he will keep him safe and protected while we wait.
So grateful for everyone that took the time to contact me and send positive vibes and good thoughts and whatever happy thoughts they had my way this week. It’s surgery day! #moyamoyadisease
#moyamoyadisease #medicalstudent
John 20:29 “Blessed are those who have not seen, and have believed.” . Today one of the things I focused in on the most at church was the pastor preaching about having doubt in God during the hard moments of your life but being brave enough to admit it. Doubt is necessary to advance and deepen us. A faith that asks questions is stronger than a faith that never thinks. . We are in the midst of fog in our situation with Miles with truly trusting God in the unknown of his future. But I feel Jesus everywhere in this. None of this happened by accident. When I look at my son I see a child saved by God because my gut pushed me to intervention and that was because my husband and I pray hard for our child. I heard a resident doctor say to his staff “This patient is extremely lucky, they found this by accident”. Nothing is accidental to God because he KNEW what he was doing the whole time. I see how hard the Lord is working for Miles but I also feel it too. Happy Easter friends. If you are in your season of doubt and in the middle of a journey you aren’t quite of out yet, we are with you and so is God. You may not feel or see it yet. But it’s coming 🙌 #moyamoyadisease #milesstrong
어느 여자가 다짜고짜반말에...저런 여자도 dm으로 오네 ㅋㅋㅋ 나 머리 아프다고 정신병자 아닌데 지랄이여 ㅋㅋㅋ 너 나중에 머리 안깨지게 조심해라. 그와중에 겁나? 겁나야 웃는 그런 싸패도 아니고.ㅋ 스트레스받네. 님들 제이린이라고(jaylin)이런 아이디 있으면 차단하세요. #정신병자년이#나댐 #dm #moyamoyadisease #희귀병
요새 좀 이상태됨. 밤낮이 바뀌어서 밤이 되면 party~예~이상태 되는데 아침되면 비실비실하다🤣 요새 몸상태가 안 좋아졌다. 균형을 잡거나, 다리 감각이 약해진다거나 가끔 머리가 묵직해진 기분이 들었다. 지금까지의 3번 뇌경색은 없지만 4번째의 뇌경색이 되면 아마 죽을것같은 걱정이 있다. 그래서 요새는 취미를 잡으려고 노력을 한다. 그저 심연의 한가운데에서 삶을 잡으려고 노력할뿐. 심연이 바라볼때 나또한 심연을 바라본다. 심연은 나를 잡아먹으려고한다. 심연이 나를 잡아먹으면 웃으면서 떠나겠다. #moyamoyadisease #우울증 #희귀병 #불치병
先日のモヤスタライブ、YouTubeにあげました🐻❄️ 最近は"苦しみの先に幸せが待ってる"と思ってた日々を思い返してる。でも苦しみの中、引き上げようとしてくれたその手があったことが幸せだったんだなって気付いて、新しい向かい風に挑んでるんだ。 あなたは体調どうですか？ 体や心をやさしく労ってあげてくださいね。 #もやもや病 #moyamoyadisease #難病 #脳外
Last Thursday. East side once again. A sweet reunion. A months-long journey that was difficult, unexpected, heartbreaking, and hopeful. Still more mountains to climb, but nice for everyone to sleep in their own familiar, comforting beds along the way. Thank you for your care. Thank you for your encouragement. Thank you for your support. Thank you for your love. #moyamoyadisease #stanfordmedicine #buffalointernationalairport #welcomehome
One day I met them at the beach in Chennai in Oct last year before my surgery. It’s been 5 months now, I was shocked that they actually remembered me. They said I’m the didi who treated them fish and chips and was going to have a brain surgery! I was so happy to meet them again. Their innocent smiles melted my heart and I wish I could do more for them… May Allah always keep them safe #brainbypasssurgery #brainbypasssurgeries #moyamoyadisease #moyamoyawareness #moyamoyawarrior #moyamoyafighter #moyamoyasurvivor neurosurgeons #apollochennaihospital #neurosurgery #drsiddharthaghosh #brainbypasssurgery #brainbypasssurgeries #moyamoyadisease #moyamoyawareness #moyamoyawarrior #moyamoyafighter #moyamoyasurvivor #anastomosis
Your's Suggestion #2 - Moyamoya Disease Moyamoya disease is a rare, progressive disorder of the blood vessels in the brain, characterized by the narrowing or blockage of the internal carotid arteries Here are some key points: 1.Vascular Abnormality Moyamoya disease involves the narrowing of the internal carotid arteries, which reduces blood flow to the brain. 2. Symptoms Common symptoms include recurrent transient ischemic attacks (TIAs), strokes, seizures, and headaches, especially in children and young adults. 3. Progressive Nature The disease typically worsens over time, leading to an increased risk of stroke and other complications if left untreated. 4. Etiology The exact cause of Moyamoya disease is unknown, but genetic factors may play a role, as it can run in families. It is more prevalent in people of Asian descent, particularly in Japan. 5. Diagnostic Imaging Diagnosis often involves imaging tests such as angiography, MRI, or CT scans to visualize the narrowed blood vessels characteristic of Moyamoya disease. 6. Treatment Treatment aims to improve blood flow to the brain and prevent strokes. Surgical options such as bypass procedures or indirect revascularization techniques are often considered to restore blood flow. 7. Long-term Management Patients with Moyamoya disease require long-term monitoring and management to prevent complications such as stroke recurrence or cognitive impairment. #moyamoyadisease #moyamoya #moyamoyawarrior #moyamoyaawareness #neurologie #neurology #brain #stroke #tia #cerebralbloodflow #revascularizing #cerebralischemia
It’s almost been a full month since Miles has been back to school and today he walked through the doors with the biggest smile on his face! Please pray for him while he adjusts to being back and getting into a routine again. We aren’t sure how long he will be back to school but I know that he’s so happy to have some normalcy again and to see his friends. It’s also a big day because Miles case should hopefully be read by the Neurovascular clinic at Boston Children’s today. We are hoping to hear back from their office this week regarding his case and what their recommendations are and if they’ll consult or decide to take him on as a patient now. Dr. Smith at Boston Children’s is the best surgeon in the country for MoyaMoya in pediatric cases and we are praying we get his feedback soon! #moyamoyadisease #moyamoya
Confused by symptoms like weakness, numbness, or frequent headaches? These could be signs of Moyamoya Disease, a condition affecting blood flow to the brain. Don't let a complex diagnosis overwhelm you. Ezyhealthcare's new blog empowers you with knowledge! We explore Moyamoya Disease in detail: causes, symptoms, and treatment options, including advanced surgical techniques available internationally. Wondering if seeking care abroad is right for you? We explore the benefits of international medical tourism for Moyamoya Disease treatment. ✈️ Take charge of your brain health! ➡️ https://blog.ezyhealthcare.net/understanding-moyamoya-disease-a-comprehensive-overview/ #MoyamoyaDisease #BrainHealth #Ezyhealthcare #MedicalTourism
As I wait to see the neurologist to discuss my post surgery MRI/MRA scans to see if the brain by pass worked, I sit by myself and ponder about life. We plan many things about our lives, but actually nothing is in our hands.Allah is the ultimate planner and I leave everything in His hands. I don’t feel I’m sitting here alone, Allah is with me every step. Every breath I have is a bonus and so grateful for it. Alhamdullilah for everything 🙏🏼 #brainbypasssurgery #brainbypasssurgeries #moyamoyadisease #moyamoyawareness #moyamoyawarrior #moyamoyafighter #moyamoyasurvivor neurosurgeons #apollochennaihospital #neurosurgery #drsiddharthaghosh #brainbypasssurgery #brainbypasssurgeries #moyamoyadisease #moyamoyawareness #moyamoyawarrior #moyamoyafighter #moyamoyasurvivor #anastomosis
I wanted to show you guys a few pictures. Why I say sometimes I don’t understand things the first picture you’re going to see is just a normal brain how it should look with a cerebral angiogram the second picture is “my brain” 🧠 . so yes, when I get confused, I don’t understand stuff. It’s very difficult for me. I shouldn’t be alive. This is why I work so hard because I know I’m behind from the start, I don’t always see the clear picture, but when I do. I work so hard to fix it and make it right. #stroke #strokesurvivor #moyamoyadisease
Today makes it 10 years since my stroke. I’ve definitely gotten better over the years, but there are still parts of the old me I miss often. #Moyamoya #MoyamoyaDisease #MyMoyamoya #MoyamoyaDiseaseAwareness #MoyamoyaFighter #MoyamoyaWarrior #Migraines #Seizures #TIAs #TransientIschemicAttacks #Strokes #BrainSurgery #Neurosurgery #Neurosurgeon #Neurologists #NeuroNurses #MUSCHealth #Aphasia #StrokeSurvivor #MMDiagnosis 05.25.2005 #ECICDirectBypassSurgery - left side 03.31.2010 #HemorrhagicStroke 03.20.2014 #IndirectBypassSurgery - right side 11.28.2018 #kidneycancer #renalcellcarcinoma 6.8.2020 #nephrectomy 7.9.2020 #babyblueribbon - moyamoya #orangeribbon - kidney cancer
Since the beginning of the year, I’ve been experiencing the strangest nonstop lightning bolts of pain in my head. They were different than migraines & soon Jake & I noticed I was also dizzy, forgetting words, misplacing things around the house, & that I always felt tired. My neurologist ordered tests & while the MRI was clear, the MRA showed narrowing in the arteries in my brain. The follow up cerebral angiogram confirmed my diagnosis: Moyamoya disease. It’s a very rare disease in which the blood vessels entering the brain become too narrow & prevent proper blood flow to the brain. The resulting backup of blood causes tiny arteries to make their own ineffective paths; greatly increasing my risk of stroke & cognitive impairment. The only real option for attempting to minimize this risk is brain surgery so today we met with a neurosurgeon & we’re moving forward with the surgery plan. We are hoping to get scheduled in the beginning of April. If you’ve got positive vibes, send them our way 💙 #moyamoyadisease @daftska
Update on Tahira’s appointment from yesterday.. Stanford did not get the images yet. They should get it by the end of this week. However Kapiolani sent me the report: “Worsened narrowing and decreased flow related enhancement in bilateral posterior cerebral arteries.” And “Bilateral posterior communicating arteries again appear small, right larger than left. Worsened narrowing of bilateral posterior cerebral arteries, left worse than right with faint residual flow.” ***Kapiolani compared yesterday’s images to last year’s images*** #MoyamoyaDisease #MoyamoyaAwareness #MoyamoyaWarrior #PrincessWarrior #TahiraStrong
Learn more about moyamoya disease on our website resources page where we have links to many reliable sources https://moyamoya-foundation.org/resources Checkout the Mayo Clinic video on our resource page or directly at https://youtu.be/fUWHV0yOy3o #Moyamoya-Foundation #MoyamoyaDisease #RareDisease #Moyamoya
During the last week Dan and I have been re watching Dawson's Creek. A favorite of mine, by the way. We watched it years ago when it first aired on TV. Every single time we sit down to watch it, he asks the same questions: Did I watch this show before? Did we finish the whole thing? What is the name of the actor who plays Pacey? Was he on Fringe? I laugh every time he asks these questions, and I can't help it. They are always in the same order too. So last night I told him before we watch the show, he needs to read the sticky notes. I don't like hurting his feelings. He gets sad when I laugh, but it's hard not to. I know he has a brain injury, I understand that, but he thinks he is dumb and is always apologizing for not remembering. Hopefully, this will help him. The second picture is Dan wearing his gear while playing Diablo just for fun. #strokesurvivor #moyamoyadisease #caregiver
Corey and I have been sitting on the hardest decision we will ever have to make as parents for the last few days. Miles neurosurgeon called us a few hours after his angiogram on Friday and told us his findings. He said that it's pretty the best case scenario you could have for MoyaMoya disease. But there is no real clear direction on what to do because the disease will never go away. He said based on the statistics he doesn't have a clear recommendation going forward because there is no real data for a case like Miles. It's up to Corey and I now to decide what we think is best for Miles long term and his future. If we opt to not have surgery, then we image every 3 months and maintain with meds. If we go for surgery it would be scheduled in the next 3-5 weeks. His doctor said he's only had one case where they maintained with scans and meds but after a year his patients disease got worse and they had to do surgery anyway. Right now we are deciding what holds the greatest risk for Miles. Do we wait and scan, which could still increase his chance of stroke, or the MoyaMoya spreading to his left side of his brain which would be worst case scenario for him because he can’t have surgery on both spots at the same time. He’d have to wait a year to operate. Or do we proceed with surgery now which gives him the adequate blood flow but also has a number of risks as every surgery does because they’ll open his brain up. The hardest part with this disease is just waiting for something bad to happen. It’s progressive so we will always be living with the fear of something happening. We are going to give his care team our decision in the next week or so. We also asked for his team to send his case out to other pediatric neurosurgeons around the country to get their opinion on what we should do. So please Pray for Corey and I to make the best possible decision for Miles and his future. This is the hardest thing we have ever been through and Miles is our whole life. We’d never want to make a decision that could harm him. Thank you everyone for praying for all of us these last few weeks. ♥️
진단서. 저번에 동사무소 제출용으로 쓴거다.(지금은 제출해서 없음) 요새 구라라고 하도 뭐라하고 그래서 떼자마자 사진찍어놓은거임 ㅋㅋ 가린건 주소,주민등록번호다. 3달이상이라해서 의사가 3년이라고 쓴거임. 의사피셜 "어차피 너의 병은 불치병이고 10년이건 30년이건 쓰고싶으면 맘대로해라 적어줄게" 했음 #모야모야병 #moyamoyadisease #희귀병 #진단서 #환자#재업
What Causes Moyamoya Disease? Doctors do not fully understand what causes moyamoya disease. It can be an inherited condition or appear as an isolated, random disease. We will be going through genetic testing in about 4 more months. Julianna Is currently being studied by doctors. She's agreed to let them research and study her records and imaging.. there were only about 7 people in all of Nevada who were diagnosed with this disease just last year. What is moyamoya disease? Moyamoya disease affects the blood vessels in your brain. It's a cerebrovascular disease. In moyamoya disease, at least one carotid artery — and sometimes both — narrows or closes. In Juliannas case it was on her left side. Additionally, the front and/or middle cerebral arteries can be blocked. These key arteries deliver blood and oxygen to the front two-thirds of your brain. Over time, your brain forms new blood vessels to make up for the blood and oxygen lost from the blockage. But since these blood vessels are formed as emergency backup vessels, they're smaller and often weaker than the blocked artery. These smaller, backup arteries often can't supply enough blood to your brain. This may lead to brain bleeds and strokes in affected areas of your brain. What are the symptoms of moyamoya disease? The first sign of moyamoya disease is often stroke or repeated transient ischemic attacks (TIAs). Providers call these “mini-strokes.” Other symptoms may include: * Brain hemorrhage (bleeding). * Headaches. * Developmental delays. * Aneurysm (bulging or ballooning of a blood vessel, which can burst). * Involuntary movements (when your body parts move without your control). * Problems with cognitive abilities (like learning, remembering and paying attention). * Problems with your senses (sight, hearing, smell, touch, taste). * Seizures. #knowthesigns #moyamoyadisease #rarediseaseawareness #strokeawareness #seizureawareness #childhooddiseasesawareness #julissquad #julisjourney
What Causes Moyamoya Disease? Doctors do not fully understand what causes moyamoya disease. It can be an inherited condition or appear as an isolated, random disease. We will be going through genetic testing in about 4 more months. Julianna Is currently being studied by doctors. She's agreed to let them research and study her records and imaging.. there were only about 7 people in all of Nevada who were diagnosed with this disease just last year. What is moyamoya disease? Moyamoya disease affects the blood vessels in your brain. It's a cerebrovascular disease. In moyamoya disease, at least one carotid artery — and sometimes both — narrows or closes. In Juliannas case it was on her left side. Additionally, the front and/or middle cerebral arteries can be blocked. These key arteries deliver blood and oxygen to the front two-thirds of your brain. Over time, your brain forms new blood vessels to make up for the blood and oxygen lost from the blockage. But since these blood vessels are formed as emergency backup vessels, they're smaller and often weaker than the blocked artery. These smaller, backup arteries often can't supply enough blood to your brain. This may lead to brain bleeds and strokes in affected areas of your brain. What are the symptoms of moyamoya disease? The first sign of moyamoya disease is often stroke or repeated transient ischemic attacks (TIAs). Providers call these “mini-strokes.” Other symptoms may include: * Brain hemorrhage (bleeding). * Headaches. * Developmental delays. * Aneurysm (bulging or ballooning of a blood vessel, which can burst). * Involuntary movements (when your body parts move without your control). * Problems with cognitive abilities (like learning, remembering and paying attention). * Problems with your senses (sight, hearing, smell, touch, taste). * Seizures. #knowthesigns #moyamoyadisease #rarediseaseawareness #strokeawareness #seizureawareness #childhooddiseasesawareness #julissquad #julisjourney
Learn more about moyamoya disease on our website resources page where we have links to many reliable sources https://moyamoya-foundation.org/resources #Moyamoya-Foundation #MoyamoyaDisease #RareDisease #Moyamoya #Water
Miles got great news at his Neuro appointment today! His sickle cell and neurofibromatosis tests were all negative which means his MoyaMoya has been categorized as idiopathic. Corey and I are so thankful that nothing else is triggering his disease which means his doctors can focus solely on the MoyaMoya diagnosis and nothing else. Miles will have an outpatient cerebral Angiogram in the next few weeks to determine the severity of his disease. After that his neuro team will decide if surgery is needed immediately or if we can monitor him with scans until it’s time for the procedure. Bubs got to meet his new neurologist Dr. Purcarin today and see Dr Balsara again! We are very confident this team will keep Miles safe and give him the best shot for the future. Thank you everyone for keeping our sweet boy in your thoughts and prayers. They are working and so is God! #moyamoyadisease #milesstrong
Today is #MoyamoyaMonday for some of you but everyday is Moyamoya day for me. This past week has really turned my world upside down. No one had concrete answers for me. After a multitude of tests, scans, bloodwork and meeting about 30 specialists in 3 days, I was diagnosed with Moyamoya. It is a progressive brain disease with an unknown cause and no cure. It results in stroke, TIA, seizures and migraines. Instead of thinking it is a death sentence, I am making it my mission to bring awareness so my family, friends and strangers will know how to help me should I have another stroke. My brain may be a little broken right now but it still works and I am extremely blessed. Google it. Learn about it. Maybe you can save a life...maybe you’ll have to save my life. . . . #calligraphy #moderncalligraphy #art #handwriting #calligrabasics #calligrafriends #calligraphynewbie #lettering #calligraphylove #letteringchallenge #handlettering #letteringwithpositivity #writing #letter #moyamoya #moyamoyadisease #moyamoyawarrior #moyamoyaawareness #moyamoyaawareness
Part 65 4 years ago today, I had my second of three brain surgeries. For this one, my neurosurgeon performed a right craniotomy and STA-MCA bypass. It was an 8 hour surgery and everything went perfectly with it. I remember getting ready for my surgery the day before and being heartbroken because I was going to miss my sons 10th birthday. We had a little early birthday party for him and that made me feel a little better. Because my surgery was going to be so early in the morning, and the hospital where it was going to be at was a two hour drive away from our home, my husband and I left the night before and decided to get a motel. We were just hoping to get a cheap one because it was going to be for one night. Oh boy, to say it was cheap is an understatement! I think we found the sketchiest place in Salt Lake City! There was a huge gap under the door and the walls were paper thin. The parking lot was completely empty when we went to bed, so we felt a little safer, and it was just going to be the one night, so we decided to rough it. When we woke up in the morning the parking lot was completely full, we figured it was probably all the people who had been to the Jazz game the night before and didn’t make reservations, so they ended up with us at the sketch motel haha. I had to stay in the hospital for 6 days because my blood pressure was too low and wasn’t stabilizing. Kurt went home after I was out of surgery to take care of our family and my mom came up to stay with me, I am so grateful for the wonderful support system that I have.
It’s hard to believe it’s been over a week since we received Miles MoyaMoya diagnosis. It’s been a really stressful, sleepless and anxiety filled 7 days at home watching Miles’ symptoms and making sure he’s okay. It’s hard watching your child go through a very deadly, but invisible disease. Minus his eye and mouth tick, Miles is the same boy he was before his diagnosis. My very active five year old has now been told to slow down but also keep an elevated blood pressure to help with blood flow, but not to high or too low, and don’t dehydrate or else he will stroke. It’s a lot. A lot of constant worry and stress that every tick or strange thing he does makes my brain go straight to “is it stroke related”? Corey reminds me daily that Miles is safer now than he was two weeks ago. And I’m truly living that phrase right now. And man is this kid strong. He had to quit soccer but understands why he can’t play. He helped his teammates at practice while daddy was coaching. He also got to cheer on his old baseball teammates this week and got the itch to play again so maybe in a few years he’ll be back on the ball field! He’s been so brave and taking everything as good as he can. He knows that water is his medicine and he never complains about not getting anything else. Corey and I have learned so much about MoyaMoya this week and have been able to talk to other families going through what we are going through now. We have so much to be thankful for and I have to remind myself it could always be worse. Five in a half years ago, God knew what he was doing when he made us Miles’ parents. I truly believe we were meant to parent him to give him the best possible shot at life. We have so much uncertainty ahead of us but are trusting God to take care of our boy ♥️ #milestrong #moyamoyadisease
Learn more about moyamoya disease on our website resources page where we have links to many reliable sources https://moyamoya-foundation.org/resources #Moyamoya-Foundation #MoyamoyaDisease #RareDisease #Moyamoya
Happy Women’s day to all you ladies who challenge yourself each day good or bad!! This is my car account but because I am a 3x stroke survivor with this rare brain disease that has had brain surgery. I will continue to educate all those. Each day is a challenge and a blessing to be here. My car is what keeps me motivated and alive. I don’t know the time I have left and BET I am living each day as it could be the last 🩵💙🩵💙🩵🙏🏼 #moyamoyawarrior #moyamoyadisease #moyamoyastrong💪🏻💙 #brainsurgerysuvivor
Fighting to feel better and find answers to my health questions. Working with @restorehealthlab to be heard, find the root cause and work on improving my health. Since we haven't worked together in over a yr before my Moyamoya diagnosis; running all the tests on me. Happy to get back on track and feeling better about where I am going. Neurologist just concerned with my brain. Yes that's important but at what cost to the rest of me and my quality of life. #MoyamoyaDisease #perimenopausal #HTMA #Dutchtest #gut #hormones #BHRT #joints #muscles #heavylifting #protein #wantanswers #fightingtogetanswers #dontsettle #WORTHY #qualityoflife #mybestadvocate #selfcare #JamieKernLima #functionalmedicine #ME
Welp, there goes that theory. Does this mean I can’t blame my parents for my strokes?! #undiagnoseddisease #undiagnoseddiseasesnetwork #youngstrokesurvivor #moyamoya #moyamoyadisease
Meet Dr. James K. Liu, Director of the Skull Base Institute of New Jersey, Neurosurgeons of New Jersey, NYU Langone Neurosurgery Network. He also is the Director of Cerebrovascular, Skull Base and Pituitary Surgery in the Department of Neurosurgery at Cooperman Barnabas Medical Center, RWJ Barnabas Health. Dr. Liu is an international leader in cerebrovascular and skull base surgery, advancing treatments for #moyamoyadisease and carotid occlusive disease. He has developed a novel technique for combined direct STA-MCA bypass with an indirect pericranial innominate fascial flap to increase brain revascularization for stroke prevention in moyamoya patients. In addition to moyamoya, Dr. Liu also treats patients with complex tumors in the brain, skull base, and spinal cord, including pituitary tumors, acoustic neuromas, meningiomas, chordomas, and paragangliomas. His expertise extends to cerebrovascular microsurgery, addressing conditions like brain aneurysms, arteriovenous malformations, cavernous malformations, and neurovascular compression syndromes (trigeminal neuralgia, hemifacial spasm). Dr. Liu utilizes advanced technology and innovative cutting-edge techniques, including minimally invasive endoscopic endonasal surgery (“EEA”), keyhole microneurosurgery, and awake craniotomy with brain mapping, to treat complex tumors and neurovascular diseases. Dr. Liu is an international expert and highly sought-after Visiting Professor, with over 500 invited lectures worldwide. As the creator of the “The Art of Brain Surgery: Masterclass” Youtube series and a prolific author of over 300 published journal articles and 30 textbook chapters, Dr. Liu is dedicated to advancing the field of neurosurgery through education and research. He is a member of the World Academy of Neurological Surgery, Society of University Neurosurgeons, and founding member of the Yaşargil Microneurosurgery Academy. He also currently holds the position of Secretary-Treasurer of the International Meningioma Society, Medical Advisory Board of the Acoustic Neuroma Association of New Jersey, and a proud supporter of @moyamoyabrave and is passionate about caring for moyamoya warriors.
Meet Dr. James K. Liu, Director of the Skull Base Institute of New Jersey, Neurosurgeons of New Jersey, NYU Langone Neurosurgery Network. He also is the Director of Cerebrovascular, Skull Base and Pituitary Surgery in the Department of Neurosurgery at Cooperman Barnabas Medical Center, RWJ Barnabas Health. Dr. Liu is an international leader in cerebrovascular and skull base surgery, advancing treatments for #moyamoyadisease and carotid occlusive disease. He has developed a novel technique for combined direct STA-MCA bypass with an indirect pericranial innominate fascial flap to increase brain revascularization for stroke prevention in moyamoya patients. In addition to moyamoya, Dr. Liu also treats patients with complex tumors in the brain, skull base, and spinal cord, including pituitary tumors, acoustic neuromas, meningiomas, chordomas, and paragangliomas. His expertise extends to cerebrovascular microsurgery, addressing conditions like brain aneurysms, arteriovenous malformations, cavernous malformations, and neurovascular compression syndromes (trigeminal neuralgia, hemifacial spasm). Dr. Liu utilizes advanced technology and innovative cutting-edge techniques, including minimally invasive endoscopic endonasal surgery (“EEA”), keyhole microneurosurgery, and awake craniotomy with brain mapping, to treat complex tumors and neurovascular diseases. Dr. Liu is an international expert and highly sought-after Visiting Professor, with over 500 invited lectures worldwide. As the creator of the “The Art of Brain Surgery: Masterclass” Youtube series and a prolific author of over 300 published journal articles and 30 textbook chapters, Dr. Liu is dedicated to advancing the field of neurosurgery through education and research. He is a member of the World Academy of Neurological Surgery, Society of University Neurosurgeons, and founding member of the Yaşargil Microneurosurgery Academy. He also currently holds the position of Secretary-Treasurer of the International Meningioma Society, Medical Advisory Board of the Acoustic Neuroma Association of New Jersey, and a proud supporter of @moyamoyabrave and is passionate about caring for moyamoya warriors.
Four years ago, I was released from the hospital after nine days and a brain surgery. Today, I scheduled my third round of follow-up imaging. Two weeks ago, I was in the ER for chest pains and went through four very painful, failed attempts to place an IV. This experience has me worried about how imaging is going to go. Perseverance is hard, especially when it’s the only option you have. #moyamoya #moyamoyadisease #moyamoyawarrior #mri #needlesarescary #imsad
World Rare Disease Day 2024! In honor of this day, I want to reshare these pictures. A little clip of Tahira’s battles. This girl is the strongest person I know! Two brain surgeries, strokes, seizures, TIAs won’t hold this girl down! 💙 #MoyamoyaDisease #MoyamoyaAwareness #PrincessWarrior #TahiraStrong
10 years of #rarediseaseday for @vbean101, our family & friends. It is truly amazing how much the #moyamoyadisease community has grown. We need to continue to Raise Awareness for this incurable disease. We have been so incredible fortunate to have met/work with Amazing People around the world to help research & advocacy grow. Special Thank you to Vicki @everlastingaffairsct for bringing the @moyamoyafoundationco idea to life on June 29th, 2017 - Picture #5 We officially became a 501C3 in Dec 2018, We have a dedicated board & MAB of Dr's and can't wait for All upcoming projects to be announced. Thank You to Everyone who's lives have been touched by #moyamoyadiseaseawareness we couldn't have gotten this far without you All. We may be Rare, but we NOT alone 💙
Exciting times @uoflhealth @uoflneurosurgery @uoflneurology with creation of a new neuroscience institute! Thanks to @whas11 for having me on to promote awareness of #moyamoyadisease and other steno-occlusive disorders! With new #Louisvillebypassprogram we aim to help patients in state and region get the best care they can via interdisciplinary approach! Unusual case below of M1 narrowing with stroke young patient. We tend to see less typical narrowings in this area. Home POD2 after bypass! Full clip: https://youtu.be/iagxBD39FzU?si=VacMnX9VpMMBysYW
@drjoshabecassis stopped by @WHAS11 yesterday to talk about the Louisville Brain Bypass program. @UofLHealth is one of the only centers in the region to offer this surgery for patients with Moyamoya Disease and other similar conditions. Click the link in our bio to watch the interview. - - - - #UofLNeurosurgery #Neurosurgery #MoyamoyaDisease #MoyamoyaSyndrome #MedEd @universityoflouisville
In 2015, I became a #raredisease patient when I was correctly diagnosed with #moyamoyadisease after an 18 year diagnostic odyssey and four strokes. While I felt alone and scared as I faced bilateral brain surgeries, I was fully supported by family and friends, and soon learned of a supportive new community of rare disease warriors. It’s the club no one wants to be part of, yet is so inclusive and empowering. To all my fellow warriors, especially those with Moyamoya, I am with you and stand by you always. Let’s raise awareness, support one another, #careaboutrare and save lives on this #rarediseaseday2024!
Today is Rare Disease Awareness Day! 🩷❤️🧡💛💚🩵💙💜🤎🖤🩶🤍 There are over 300 million people in the world with rare diseases. It’s a tough road having something most doctors are unfamiliar with. Today I would like to bring awareness to a rare disease - Moyamoya Disease. 🦋 One in a million are affected. This disease is misdiagnosed ALL of the time as very few even know about it. I know I didn’t. It can have the same symptoms as other more common neurological health issues or a side effect of another known health issue. There is no cure however, surgery can help decrease the risk of stroke. #rarediseaseawarenessday #moyamoyadisease #moyamoyadiseasewarrior #advocate #zebra #oneinamillion #themoreyouknow🌈
Tänään karkauspäivänä vietetään harvinaisten sairauksien päivää. Suomen väestöstä on 6-8% harvinaissairaita ja Helmi on yksi siihen porukkaan kuuluvista. Helmin sairastamaa Moyamoya-tautia on Suomessa vain noin 150 ihmisellä. Todennäköisesti heitä voi olla enemmänkin mutta tauti on melko vaikea diagnosoida ja oireilu todella yksilöllistä joten diagnoosin tekeminen monesti pitkittyy. Moyamoya on valtimoperäinen sairaus, joka johtuu kallonpohjan aivoverisuonten etenevästä ahtautumisesta. Siihen ei ole varsinaista hoitoa mutta lääkkeillä ja leikkauksella voidaan yrittää hillitä oireita. Sairaus on osalla ihmisistä lähes oireeton mutta niin kuin Helmin kohdalla se voi aiheuttaa aivoinfarkteja ja tia-kohtauksia. Monen harvinaissairauden kohdalla on monia haasteita nimenomaan sen harvinaisuuden vuoksi. Esimerkiksi moyamoyan kohdalla useat lääkärit/hoitohenkilöstö kuulevat sairaudesta ensimmäistä kertaa mikä tietenkin tarkoittaa sitä että meillä ei ole ammattilaisia joilta kysyä apua sairauteen liittyvissä asioissa. Myös tutkittua tietoa on kohtalaisen vähän mikä vaikeuttaa hoitoa. Monesti sairastuneet ja heidän läheisensä jäävät yksin sairautensa kanssa, koska vertaistukea tai edes ammattilaisen osaamista on vaikea löytää. On hyvä lisätä tietoisuutta harvinaissairauksista ja tehdä töitä sen eteen ettei kukaan jäisi yksin oman tai läheisensä sairauden kanssa. #harvinaistensairauksienpäivä #harvinaiset #harvinaissairaus #ultraharvinainen #moyamoya #moyamoyadisease #rarediseaseday #raredisease @harvinaiskeskusnorio @harvinaisetverkosto
Rare Disease Day 2024 is tomorrow! While I’ve had to take a step back on my rare disease advocacy over the past couple years, I’ll always advocate and raise awareness for the more than 300 million people living with one, including my #moyamoyadisease disease, in the world! I missed being on Capitol Hill this year, and miss speaking on this special day…but I’ll be back. Thank you to my fellow advocates and@patients who are fighting for all of us! #rarediseaseday2024 #rareDC2024 #careaboutrare #moyamoya
. 明日は2回目の反対側の手術 3回目はないといいな . いってきます！ . . . #もやもや病 #指定難病 #ウィリス動脈輪閉塞症 # #moyamoyadisease
Hai Kawan Awak! Moyamoya terdengar seperti nama yang unik, namun tahukah kawan awak bahwa Moyamoya Disease merupakan salah satu penyakit Stroke yang dapat menyerang di usia muda. Dalam rangka Hari Penyakit Langka Internasional, Rumah Sakit Columbia Asia Aksara mengajak kawan awak untuk berdiskusi dan menghindari penyakit ini dengan segera dan dengan penanganan yang tepat. Narasumber : dr. Steven Tandean, M.Ked(Neurosurg), SpBS Dokter Spesialis Bedah Saraf RS Columbia Asia Aksara Host : dr. Khairul Imami Yuk tonton Live Instagram kali ini dan share juga kepada seluruh keluarga dan teman terdekat untuk tetap selalu sehat ya! Salam Sehat, RS Columbia Asia Aksara #LiveInstagram #Live #LiveEdukasi #PenyakitStroke #Stroke #Moyamoyadisease #RSColumbiaAsia #RSColumbiaAsiaAksara #SehatBersamaRSColumbiaAsia #ColumbiaAsiaPilihanku #KamidiSiniuntukmu #CreatingANewScript #thebestcarepossibleclosertohome
Dear Moyamoya Disease patients and families, Get involved in our NIH-sponsored study on discovering genetic risk factors for Moyamoya Disease! We have already discovered multiple genes for various other neurological disorders (see our publications at the link in our bio) and we are excited to identify new genes in MMD. Get involved if you haven’t yet - you don’t have to travel, and it is entirely free! Our social media recruitment platform allows you to enroll from home and complete each step with ease. To participate or get more information, visit our website and find the “Join Our Studies” page. Our goal is to help devise better diagnostic and treatment strategies for Moyamoya and other neurological disorders! If you have any additional questions, please send an email to: [email protected]. Kristopher Kahle, M.D., Ph.D. Massachusetts General Hospital Harvard Medical School https://www.kahlelab.com Twitter: @kahlelab
CaringBridge collab sesh in mom’s hospital room. #views #stanford #stanfordmedicine #caringbridge #moyamoya #moyamoyadisease
They say the body remembers. That stress and trauma are stored there unless it is dealt with and released. We know we are holding it. As dad and I made our way back to the hospital this morning, I could feel it. I still can. I am trying to use my tools. Listen to what my body needs. But it’s going to take time. We have had four mornings leading up to today that have all been super hard and unexpected. Fifteen hours Tuesday and twelve visiting hours in the ICU each day since. Tuesday was the surgery. Wednesday brought a seizure. Thursday brought pulmonary edema and breathing support. Friday brought a stroke, blood transfusions, changing blood pressure, a blown out vein, loss of speech and the ability to swallow, and a plan for a feeding tube. With the loss of almost total communication yesterday came so much frustration. I asked choice questions with my hands and she tapped the hand that showed what she wanted. I created digital word tiles on a tablet here that have been somewhat helpful. And we now know certain gestures mean she either wants the tablet with the word tiles, her phone, or her glasses. But truly, yesterday was really emotionally hard on mom, dad, and me seeing so many perceived setbacks to recovery. Each morning we hold our breath to see what the new day brings with it. So this morning we were braced for what might have transpired overnight. We set big family goals for the overnight care team and were relieved to see she made some progress! We set more goals for this morning and she is crushing them. She moved to a chair to see out the window for a bit. Her face is washed. Her hair is combed. Her teeth are brushed. And she has said the words “I,” “want,” and “no.” Her brain is healing. Her body is healing. And we will keep working to acknowledge our fears and heal the stress and trauma we all have been holding onto. *Pic of the beautiful full moon over the hospital entrance art as we left for the hotel last night. #stanford #stanfordmedicine #healing #moyamoya #moyamoyadisease
En zor gecemizi de atlatmamıza az kaldı. İnşallah sabah saatlerinde yoğun bakımdan servise alınacak Orhun şu an daha iyi. Dualarınız için herkese çok minnettarım. 🙏🙏🙏 (Bilmeyenler için oğlum Moya moya adlı hastalıktan dolayı beyin by pass ameliyatı oldu) Arayan soran merak eden ve dualarıyla destek veren herkese çok ama çok teşekkür ederiz 🙏🙏🙏 #moyamoyadisease
Today is the day. Her numbers came down and she has been cleared for brain surgery. This place is amazing and she is in capable hands. Time to let the medical team do their thing while we feel all the feelings. #stanfordmedicine #moyamoya #moyamoyadisease
The Moyamoya means a puff or spiral of smoke describing the cloud-like lenticulostriate and thalamostriate collaterals. Staging of moyamoya disease Stage 1: 'Narrowing of carotid fork'. Stage 2: 'Initiation and appearance of basal moyamoya'. Stage 3: 'Intensification of basal moyamoya'. Stage 4: 'Minimization of basal moyamoya'. Stage 5: 'Reduction of moyamoya'. Stage 6: 'Disappearance of moyamoya' #medstudent #medicaleducation #moyamoyadisease #medschool #medicalresearch #casepresentation #deenandscrubs
A year ago today we had no idea we would face this rare desease #moyamoya By the grace of God, we made it through surgery #1! We will be facing surgery #2 and we know who stands behind us ❤️ Thank you Jesús for being so good to us! Four strokes could’ve caused severe damage, you had plans for us and they were plans not to harm us. #jeremiah2911 #miracle #holyspiritcome #godisgood #moyamoyadisease #moyamoyasurvivor #moyamoyasyndrome #godfirst #godlovesyou
𝚂𝚞𝚗𝚍𝚊𝚢 𝚟𝚒𝚋𝚎𝚜 ❤️🦁 Liebe es, wenn der Lidstrich beim ersten Mal sofort klappt ✔️ Ansonsten war ich letzte Woche out of order 🥲 Aber jetzt geht es wieder zu 80% 🦁💪🏼 Deswegen einen wundervollen Start in den Montag, das Wochenende naht schon wieder 🤪🥲 #outoforder #krank #krankheit #jungaberschwerkrank #lidstrich #schminken #beauty #sonntag #sunday #sundayvibes #like #love #liebs #moyamoya #moyamoyadisease #moyamoyawarrior #moyamoyaawareness #moyamoyastrong #moyamoyasurvivor #stroke #strokesurvivor #schlaganfallkannjedentreffen #schlaganfall
We did it👏🏼 we are now an officially registered charity! So much hard work went into this, stress, tears, meetings & so much medical knowledge we have built up over the last 9 months of Lucas’s illness. Today, we are proud of us🥂 Remember to share our page, check us out on Facebook. Have a look through our website & get in touch for enquiries ✅ #moyamoyadisease #sheffield #registeredcharity
동생 생일 축하해. 아픈동생에 아픈 언니지만 이날만은 축하 많이받았으면 좋겠다. 새해복 많이받아 (내케이크아님ㅎㅎ) #moyamoyadisease #생일 #새해복많이받아#동생시키💕 #새해복많이받아
#beachvibes #wattercolor #moyamoyadisease #lovestory #trevanterhodes
Exactly 2 years ago, my sweet Tahira got diagnosed with Moyamoya Disease. These videos were taken the night before she got diagnosed. Through all her pain, suffering and her daily battles, she still praises God. All glory to him that our baby girl is still here with us.. able to see, walk and talk. #MoyamoyaDisease #MoyamoyaAwareness #PrincessWarrior #TahiraStrong 💙