Sturge-Weber Syndrome

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Sturge-Weber Syndrome
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    #SturgeWeberSyndrome

    Life really sucks when despite your best efforts 2 b positive and combat the downside challenges, life proceeds forwards with it’s downward spiraling course !infact it can b downright awful when especially the ones who r supposed to love u the most don’t have a clue as to what u deal with daily.And even though u try to convey your deepest and
    Innermost thoughts 2 them,it’s 2 no avail that you do so ;as it all goes right over their heads.It’s a road traveled almost alone.God gives u the strength to carry on with strength beyond what is normal but u still have a very heavy load to carry when you have a genetic disorder called mitochondrial myopathy and Lyme disease with fibromyalgia added to the mix and Asthma and having suffered at the hands of surgeons more than ten times....need I say more? Difficult does not even closely or remotely describe this living nightmare called life!Shame in those who sit in judgement of those like myself who suffer in silence.May God bless those who take a moment from their desperate busy lives to briefly show some compassion and empathy!After all nobody wants your sympathy just your understanding and a little kindness!😂😃😜😄

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    Not All SWS Are Kids Anymore

    I can't say how many times I have come home from the hospital with paperwork that says "Your child has Sturge Weber Syndrome." I can't tell people how often a medical professional has to look up what Sturge Weber Syndrome is. I am frustrated by the fact that the "specialists" who actually deal with SWS only deal with kids, studies are for kids and the condition is treated in kids, not adults. What is seen as a "corrective procedure" for the same exact condition in someone under 18 is seen as "cosmetic procedure" over 18.

    Do we say that someone no longer has Down's Syndrome or any other gene based birth defect after 18? Do we stop treating them comprehensively because of a birthday? If not then why is SWS treated so? Our condition can become worse with age in some cases so we need assistance however, instead of having a single doctor familiar with our condition we have must find a collection of doctors who may or may not work together and be familiar with our condition. It becomes a merry-go-round of doctor’s visits. The treatments become a collection of calls and at times expensive repetitious tests between doctors which delay possibly getting better.
    Funny thing is no one is addressing the fact that as the children with SWS age this is going to become an increasing issue. If you dare move from your original location, your pediatrician drops your child or gets better enough to be independent enough to live alone and on their own insurance they will be forced into their own nightmare maze of doctors and medical care.
    So how do we fix this How do future generations avoid this difficulty No one deserves this kind of neglect ignorance and frustration. I call upon the advocates and parents to help their kids to help them grow into independent adults who can have a life. They may be able to do it to have a college degree have a family and child a job. I have done it with type 2 SWS and regret nothing. Advocate PLEASE. #swsadults

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    Youtubers with chronicillnesses and disabilities

    Youtubers with chronic illnesses or disabilities

    Polar Warriors | #BipolarDisorder

    ResetwithTerry | Graves Disease

    FranklyFranca | Graves Disease

    Emma Tara |

    Shaina Leis | Maladaptive Daydreaming

    Leah Dawn | ME, IBS, Emeraphobia & #Depression

    Crafting For Almost Everyone.

    Dodie – Depersonalisation Disorder

    Cara – Cerebal Palsy

    Sarah rose – #Fibromyalgia

    Life Of A Blind Girl – Retinopathy

    Fashioneyesta – #SeptoopticDysplasia

    Zoe’s Clan -EDS & co

    Serhat Eronal – #SpinalCordInjury

    Jessica Chelsey | #Lupus

    WheeledNomad | EDS & co

    Wheels2walking | Injured Paraplegic

    Able Family | Injured Paraplegic

    Jordan Bone| Injured Paraplegic

    Juliannado | Special Needs & Crohns

    Alma Guerrero | #SpinaBifida

    Fae System | Antisocial PersonalityDisoder & Bipolar

    BriaAndChrissy | OCD & PTSD

    Anna Campbell | Bipolar

    The Labryinth System | #DissociativeIdentityDisorder

    Crystal | Gastroparesis

    Liddy Alvarez | Fibromyalgia

    Kay Bre | Fibromyalgia

    The Life Of Me Smile Magee | Cancer, #Gastroparesis, Dysautonimia ETC

    Tayarra Smith | , Sherman’s Disease, #CyclicVomitingSyndrome & spine GI issues

    Grace Nicole | Schitzophrenia

    Rachel StarLive | Schitzophrenia

    Shane Dawson | Depression & Body Dysmorphic Diisorder

    Izzy MS | #MultipleSclerosis

    Chronically Lyss | #Arthritis

    Ellen Jones | Autism

    Kay Maynard | Autism

    MaxluvsMya | Autism

    Rhiannon Salmons | Autism

    The Aspie World | Autism

    Assistance Dog Adventures | Chronic Lyme

    Lemons N Lyme | Chronic Lyme

    Kim And Ross | Lyme, & ME

    Prisha Bathia | Sturge Weber Syndrome

    Lauryn Elizabeth | Hyperprolactinemia

    Shontelle Scott | Gastroparesis

    This Girl Audra | , IBS and OCD

    Gabrielle Ferguson |

    Krissy Mae Cagney | & Celiac

    Steadfast Soul |

    Brooke Houts | #Anxiety & Depression

    Nine and Vine | #BloodCancer

    Jpmetz | MS

    Invisible I | & Autism

    Ostomy Diaries | Crohn’s disease

    SarahWithStars | #ChronicPain

    Trisha Paytas | BPD & PID

    The Frey life | #CysticFibrosis

    Eyeliner and Empowerment | #CerebralPalsy

    Robyn Lambird | Cerebal Palsy

    But Ya Don’t Look Sick |

    Molly Burke | #RetinitisPigmentosa

    Painful Hilarity |

    Lucy Edwards | #Blindness

    Kelsey Darragh | #TrigeminalNeuralgia

    S

    Themitowarrior | #MitochondrialDisease

    The Killen Clan????

    EMILIA VICTORIA |#Endometriosis

    Kelsey Morris |#HipDysplasia

    Holly Vlogs | Crohn’s Disease

    In The Lyme Life | Lyme Disease

    Kiki Chanel | #CyclicNeutropenia

    Hydrohayley | Hydroceohalus

    This Gathered Nest | Down’s syndrome

    Foolyliving | Autism

    I am still ME

    PerfectlyKnitBeauty| #NeuromyelitisOptica

    Channon Rose | , PTSD, , ADD, Endometriosis

    Ally hardesty | ADHD

    JD Dalton | #Albinism

    ASL Stew | Deaf

    WheelsNoHeels | Spinal Cord Injury

    Rikki Poynter | Deaf

    Kathryn Morgan |Hypothyroidism

    Pain Doctor | Chronic Pain

    CFS Health | ME/CFS

    Young Chronic Pain | Chronic Pain

    MultiplicityAndMe | Dissociative Identity Disorder

    Stephanka | #AplasticAnemia

    DisociDID | Dissociative Identity

    Disorder

    Alivia Marie |

    OhSoAdrianna |

    Amythest Schaber | Autism

    Invisible I | & Autism

    Sitting Pretty Lolo | ALS

    The Mandaville Sisters | One Handed

    Pixiwoo|

    You Look Okay To Me | #ChronicIllness

    Caito Potatoe | Autoimmune #KidneyDisease

    A Thousand Words | Adrenal Fatigue

    Living With Addison’s | Addison’s disease

    Madison Decambra | BPD

    KaraLou |

    The Dale Tribe | Type 1 #Diabetes

    Claire Wineland | Cystic Fibrosis

    Jessica Kellgren-Fozard | HMPP, MCTD & co

    Katie Scarlett Speaks | Chronic Pain

    Just A Skinny Boy | Autism

    Sasha Aimey | Endometriosis & Arthritis

    ALifeLearned | Mental Illness

    Hannah Witton | #UlcerativeColitis

    Georgina’s Journey | POTS & ME/

    AGirlWithLyme | Chronic Lyme

    Olga Chronics |

    Sam&Alyssa | Lupus

    ChronicallySaltyy | & co

    The Files | & co

    Arianna | , & co

    Zebra to Zebra | & co

    Chronically Jenni | & co

    Morgan Grant | & co

    Simply Hannah | , POTS & co

    Abby Sams | , CRPS & co

    Izzy kamblau | & co

    Rebellious Story | & co

    Christina Doherty | & co

    Not Your Average Zebra | & co

    Simon and Martina | & co

    Amy’s Life | & co

    Annie Elainey | & co

    Chronically Kimberly | & co

    Chronically Jaquie | , Mito & co

    Sophie’s Life | & co

    Life With Stripes | & co

    Jordan Bone | Spinal Cord Injury

    Rikki Poynter |Deaf

    IDrankTheSeaWater | Tourette’s & Mental Illness

    Angie and Ruby | Stromme Syndrome

    Josh Sundquist | Amputated Leg

    Anne Spicer | Crohns & gastroparesis

    Sleepy Santosha | Adrenal Insufficency

    Live Hope Lupus | & co

    Emma Blackery| ME

    Yoga My Bed & ME | ME

    Moly Christopher | /ME

    CFShealth | ME

    Bethxxx | ME

    Miss Adventure | ME & mental illnesses

    MegSays | ME

    Ann Twirls | Chronic Pain

    VlogBrothers | & Chronic pain

    Fibro Mom |

    Service Dog Vlogs |

    Chronic illness and disabilities

    The Vlogging Murrays | Preemie & Chronic pain

    Keira Rose | Dermotilonania, Anxiety,

    Beckie brown |

    Trichitilonania

    Maya Imani | Schitzophrenia

    John Green |

    Savannah Brown | Eating Disorder, Anxiety &

    TrichJournal | Body Focused Repetitive Behaviour Disorder &

    Emily Rose |

    Bonitajunita | Trichotilonania

    Allie Malin | Trichotilomania

    TheMaddieBruce |

    Sammy Marie | &

    Madison Decambra |

    Tara Lou |

    Lace & Lashes | Crohns Disease

    Sally Boebelly |

    Crohn’s disease

    Ashley Jeneatte| Crohns Disease

    Abby Green Osteogenosis Imperfecta