#Tuberoussclerosiscomplex

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#Tuberoussclerosiscomplex Reel by @emilyphanmusic (verified account) - Living with Tuberous Sclerosis Complex (TSC) means my fine motor skills are fragile yet they're the bridge to the deepest parts of my soul. Every not
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EM
@emilyphanmusic
Living with Tuberous Sclerosis Complex (TSC) means my fine motor skills are fragile yet they’re the bridge to the deepest parts of my soul. Every note I play is a small victory over limitation. I may not play effortlessly, but I play honestly. #TSCawareness #tsc #tuberoussclerosiscomplex #tuberoussclerosis #pianistlife #truthbehindthemusic #piano #pianist #music #classicalmusic #classicalpiano #musician #classicalpianist #viral #explore #chopin #resilience #ChopinEtude #chopinetudeop10no8 classicalpiano #musicheals
#Tuberoussclerosiscomplex Reel by @laurenpolinskey (verified account) - Watch me be a bodybuilder by the time he's 18 🤣💪🏼 P.S. in case y'all didn't know (because a lot of new followers don't even realize I'm a mom) my
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@laurenpolinskey
Watch me be a bodybuilder by the time he’s 18 🤣💪🏼 P.S. in case y’all didn’t know (because a lot of new followers don’t even realize I’m a mom) my son John has a rare disease called tuberous sclerosis complex It’s a genetic condition and he’s missing the part of our DNA that regulates cell growth He can grow tumors on any organ and was born with brain tumors, heart tumors (so many in every chamber that the fetal cardiologist didn’t think he’d survive outside of the womb…), and cysts on his kidneys We found the heart tumors when I was 31 weeks pregnant and knew he probably had TSC Luckily, my ex husband was stationed near Louisville, KY right before John was born and a doctor there had started a TSC Clinic and was very passionate about the disease The hospital was partnered with the U of L and was a learning hospital so we had a team of doctors and student doctors that knew all of the recent studies and preventative care measures 🥹 We had to sign papers allowing John to basically be part of the research and start medications that weren’t yet approved for children under 2, but the previous studies showed how beneficial they were! It was a scary time in life and John was in the NICU for 5 weeks with heart problems 🥹 They made it a wonderful experience though and printed all of the studies for me so as I sat in the NICU 10+ hours a day, I got super educated on his disease and the studies that had been done! It’s really a blessing God sent us exactly where John needed to be for the best care 🥹 With tuberous sclerosis, epilepsy and autism are expected. I think it’s 90% of them end up with both! We thought we were clear from epilepsy, but at 15 months old, John started having daily seizures…. Up to 10 a day…. We tried every drug combination, but his epilepsy was drug resistant so he ended up getting brain surgery in 2021 We had the surgery done in Houston at Texas Children’s with the best neurosurgeons for his disease #thankyoutricare and thank you to everyone that donated back then because we were broke 🥹🫶🏼 We had to stay in Houston for over a month and John received laser ablation brain surgery 🤍 #specialneedsmom #specialneedsmomlife
#Tuberoussclerosiscomplex Reel by @tscalliance - "There are still too many families living with life-threatening seizures, too many doctors telling parents there's no hope," says Kristin Burkhalter,
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@tscalliance
“There are still too many families living with life-threatening seizures, too many doctors telling parents there’s no hope,” says Kristin Burkhalter, whose son Bear is living with tuberous sclerosis complex (TSC). “That just can’t happen.” Kristin and her husband, Chip, are determined to do whatever it takes to improve the lives of Bear and others like him. As co-chairs of the 50 Forward Fund, the TSC Alliance’s largest ever research initiative, they are helping accelerate scientific progress. You, too, can help alter the course of TSC by supporting research. Starting now, every gift to the 50 Forward Fund up to $20,000 will be matched by a generous donor until the end of June! Give for TSC research and learn more about the 50 Forward Fund through the link in our bio! #giveforTSCresearch
#Tuberoussclerosiscomplex Reel by @isobelnyc - what is tuberous sclerosis complex? . . . . . . . . #explore #explorepage #chronicillness #chronicallyill #disabled #disability #disabilitypride #medi
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@isobelnyc
what is tuberous sclerosis complex? . . . . . . . . #explore #explorepage #chronicillness #chronicallyill #disabled #disability #disabilitypride #medicallycomplex #raredisease #rarediseaseawareness #chronicillnesswarrior #crps #crpsawareness #paralysis #paralysisawareness #nervedamage #nervedamageawareness #dystonia #dystoniaawareness #endometriosis #endo #endowarrior #endoawareness #chronicallychill #medicalmystery #chronicillnessawareness #disabilityawareness #tuberoussclerosisawareness #tuberoussclerosis
#Tuberoussclerosiscomplex Reel by @inclusionstartsnow - Let's talk about some rare diagnosis that we are recognizing today! Conradi-Hünermann Syndrome (CHS) CHS is a rare, X-linked dominant genetic disord
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@inclusionstartsnow
Let’s talk about some rare diagnosis that we are recognizing today! Conradi-Hünermann Syndrome (CHS) CHS is a rare, X-linked dominant genetic disorder characterized by skeletal abnormalities, skin lesions, and other systemic problems.  Want to learn more about CHS and disability advocacy and make a new friend follow @cass_huff Timothy Syndrome is a rare genetic condition that affects the heart and other body systems. Children diagnosed with Timothy syndrome might have symptoms that affect their physical appearance and cognitive abilities. Mast Cell Activation Syndrome (MCAS) is a condition where mast cells in the body become overly active, releasing excessive amounts of chemicals like histamine, leading to a variety of symptoms including flushing, hives, abdominal pain, diarrhea, dizziness, and difficulty breathing, often occurring in episodes without a clear trigger Hereditary Hemochromatosis is a genetic disorder that causes the body to absorb excessive amounts of iron from food. This leads to an accumulation of iron in the organs, known as iron overload.  Kluver-Bucy-Glaser (KBG) syndrome, is a rare genetic disorder characterized by a distinctive set of physical and neurological features Tuberous sclerosis complex (TSC) is a rare genetic disorder that causes non-cancerous (benign) tumors to grow in various organs throughout the body, including the brain, skin, kidneys, heart, eyes, and lungs.  A lot of rare diagnosis have multiple disabilities and can fall into a lot of other categories. For example, my work in the deafblind field had me working with a lot of different diagnosis but a lot of those people had a combination of blind/low vision with different hearing levels. What rare diagnosis did I miss?? #inclusionstartsnow #rarediseaseday #showyourstripes #raiseinclusivekids
#Tuberoussclerosiscomplex Reel by @thatdermguy (verified account) - ⭐️Part One: Cutaneous findings in Tuberous Sclerosis ⭐️ ➡️ I am excited to announce a two-part video series on Tuberous Sclerosis Complex (TS) suppor
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@thatdermguy
⭐️Part One: Cutaneous findings in Tuberous Sclerosis ⭐️ ➡️ I am excited to announce a two-part video series on Tuberous Sclerosis Complex (TS) supported by an educational grant from Plusultra Pharma. ➡️The first video here covers the cutaneous findings in TS including hypomelanotic patches, fibrous plaques and angiofibromas. Furthermore, what is the impact of these findings on quality of life of patients? ➡️ Stay tuned for the second part this week where I cover the management options, including the only licensed product, Hyftor, for the treatment of angiofibromas. #TuberousSclerosis #TS #QoL #Angiofibromas #Hyftor Clinical images from DermnetNZ used for educational purposes
#Tuberoussclerosiscomplex Reel by @mickiesmiracles - #RePost @dr_onyx_ INFANTILE SPASM: A DANGEROUS MISDIAGNOSIS 🚨 I remember my first experience of an Absence (Petit mal) seizure while in medical sch
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@mickiesmiracles
#RePost @dr_onyx_ INFANTILE SPASM: A DANGEROUS MISDIAGNOSIS 🚨 I remember my first experience of an Absence (Petit mal) seizure while in medical school 🏫. An apparently healthy adult in sitting position, suddenly stopped talking in the middle of a discussion, started staring into space, with complete loss of environmental awareness. It lasted about 10seconds, with spontaneous full recovery. It was both interesting and harrowing for most of us then. Fast forward to a few years later,..... It's a warm uneventful evening at the emergency room and then "grin grin" says the pager, it's time to move to the female ER. During history taking, my attention is drawn to the relative's child 👶 who gives this grin facial expression accompanied with forward and outward stretching of both arms and legs 🦵 like a startle, and forward bobbing of the head. Me: Madam, I think that child needs some attention. Mother: *Confused* I'm done with my patient and then after a little discussion with the mother, she agrees to a paediatric review after child is noticed to have a repeat of same characteristic limb and head movements. After an exhaustive evaluation, it turns out the child has West Syndrome from Tuberous Sclerosis Complex. What parents dismissed as "that's how the child behaves when startled or excited", was actually Symptomatic Infantile Spasm. So, what do we know about Infantile Spasm? - Occurs in about 1:2000 infants with onset 2-12months, peaking at 4-8months. - Lasts 1-2seconds; may occur in clusters of 10-20 episodes at 5-10seconds intervals over a 2-3minutes period. - Usually resolves at 4-5years or transitions. NB: That same presentation could also be mistaken for Brief Resolved Unexplained Event (BRUE), but a quick check on the age and developmental milestones of the child showed he was 13months with developmental delays, relative to peers of same age, ruling BRUE out. So next time you think that startle reflex, colic, reflux, hiccup, head bobbing is suspicious, STOP ✋️ (See it 👀 ,Take a video 📹 , Obtain a specialist review 🏥 🏨 , Prioritize care and management 🚑💊🩺). That delayed developmental milestone could be a ⚠️ Help save that brain 🧠 today
#Tuberoussclerosiscomplex Reel by @erinktrier - May is here. ♥️ Mental Health Awareness Month. TSC Awareness Month. A big month for our family. 🥹🙏🏻 TSC (Tuberous Sclerosis Complex) is a very r
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@erinktrier
May is here. ♥️ Mental Health Awareness Month. TSC Awareness Month. A big month for our family. 🥹🙏🏻 TSC (Tuberous Sclerosis Complex) is a very rare genetic disorder that causes tumors to grow in vital organs like the brain, heart, kidneys, lungs, skin and eyes. You can read more about our son’s diagnosis and our family story in my HOPE highlight on my IG profile. Your encouragement, love, shares, stories, donations, fellow advocacy and support mean to the world to us as we continue along the journey. 🌎 Some days I feel so ill-equipped. But then I lean on these two powerful truths ⬇️ HE equips the called. 🙏🏻 and Those who HOPE in the Lord will renew their strength. ♥️ Wherever you may feel ill-equipped… Pray over it. Move over it. Nourish over it. Sing over it. Read over it. Draw over it. Pour into yourself over it. Work on you - FOR it. Because in the end - when we are called… He will equip us. So let’s keep working to take care of us so we can show up as our best in order to do our best…deal?! ♥️
#Tuberoussclerosiscomplex Reel by @focusthruandevolve (verified account) - Your daughter's journey with TSC (Tuberous Sclerosis Complex) has been one of resilience and determination. TSC caused benign tumors to develop in her
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@focusthruandevolve
Your daughter’s journey with TSC (Tuberous Sclerosis Complex) has been one of resilience and determination. TSC caused benign tumors to develop in her brain, impacting certain areas that control processing and learning. These growths led to developmental and cognitive delays, making tasks like memory recall, following multi-step directions, and processing new information more challenging. Despite these obstacles, she has worked hard to adapt and thrive—benefiting from therapies, targeted learning strategies, and an environment built on patience and consistency. Through repetition, simplified instructions, and supportive routines, she’s continued to make steady progress, proving that her determination and strength are greater than the challenges TSC has placed in her path. #tuberoussclerosiscomplex #tsc #seizure #learningdevelopment
#Tuberoussclerosiscomplex Reel by @uvahealthchildrens - "Every child with tuberous sclerosis deserves to be seen in a center of excellence." At #UVAHealthChildrens, we're proud to offer multidisciplinary c
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@uvahealthchildrens
"Every child with tuberous sclerosis deserves to be seen in a center of excellence." At #UVAHealthChildrens, we're proud to offer multidisciplinary care for tuberous sclerosis complex (TSC) and many other rare genetic diseases. 💜 Learn more about this disorder at the link in our bio. #RareDiseaseDay
#Tuberoussclerosiscomplex Reel by @dr.naveen_neurologist (verified account) - # Neurocutenous syndrome#epilepsy##neurology #tuberoussclerosiscomplex Cluster of epilepsy+ adenoma sebaceum+ asp leaf macule+ periungal fibroma+ su
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@dr.naveen_neurologist
# Neurocutenous syndrome#epilepsy##neurology #tuberoussclerosiscomplex Cluster of epilepsy+ adenoma sebaceum+ asp leaf macule+ periungal fibroma+ subependymal nodule= Tuberous Sclerosis Complex ( TSC)
#Tuberoussclerosiscomplex Reel by @mua_navi (verified account) - «A Dream Come True Solo Designer Charity Fashion Show» took place yesterday. It was a charity fashion show led by designer @lotuslinendesign And 100%
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@mua_navi
«A Dream Come True Solo Designer Charity Fashion Show» took place yesterday. It was a charity fashion show led by designer @lotuslinendesign And 100% of proceeds will be donated to the @tscalliance (TSC is a rare genetic disease that causes benign tumors to grow in the brain and throughout the body leading to other health issues. TSC Alliance is dedicated to finding a cure for tuberous sclerosis complex, while improving the lives of those affected.) So, I was really happy to be a part of this event. Not only did I do a good job as a mua, I also met a lot of new people (models, muas, hairstylists, designers and many others), and got a new great experience. It was a lot of work! Thank you ! @leilajudeh_ @lotuslinendesign #floridamua #stpetemakeup #tampamakeup #tampabaymakeup #tampabaymakeup # tampabaymakeupartist #floridafashion #tampamodel #hairstylisttampa #hairstyliststpete #makeupblogger #makeupblog

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