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tuberoussclerosiscomplex - 1.6k posts

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  • I really try to enjoy time after hospital as good as I can, before my endurance training starts. No fear, no thoughts about my healthy future - it will come what is intended for me. I know I should not define myself about the disease, but it defines me, in a special why I can’t explain. For example ... Not a day passes where I don't look in the mirror and see the tumors in my face.  When I was a little girl, I knew my face looks differently as other children face. I was offended, embarrassed, sad and wanted everything to make, wanted any pain in buying take just to look "normal". It takes that f** long way to love myself  if you have blemishes for eternity. And now ask me again, why I define myself with TSC. I know I am much more than that rare genetic disease. I had a brain surgery because of an tumor in my head 2007, 2013 and 2018 5 lung surgery’s (one of them without anaesthesia because it will be so much fun they said 😂) and a face treatment since two years with #sirolimus cream. But when I‘ll take a look in the mirror today! I love myself. I appreciate myself. And I am beautiful. With every point in my face and every scar on my body, because I am a  #tscwarrior
  • I really try to enjoy time after hospital as good as I can, before my endurance training starts. No fear, no thoughts about my healthy future - it will come what is intended for me. I know I should not define myself about the disease, but it defines me, in a special why I can’t explain. For example ... Not a day passes where I don't look in the mirror and see the tumors in my face. When I was a little girl, I knew my face looks differently as other children face. I was offended, embarrassed, sad and wanted everything to make, wanted any pain in buying take just to look "normal". It takes that f** long way to love myself if you have blemishes for eternity. And now ask me again, why I define myself with TSC. I know I am much more than that rare genetic disease. I had a brain surgery because of an tumor in my head 2007, 2013 and 2018 5 lung surgery’s (one of them without anaesthesia because it will be so much fun they said 😂) and a face treatment since two years with #sirolimus cream. But when I‘ll take a look in the mirror today! I love myself. I appreciate myself. And I am beautiful. With every point in my face and every scar on my body, because I am a #tscwarrior
  • 562 24 15 July, 2018
  • I got to be home with my little girls tonight.  It was refreshing and fun. We had a special snack, snuggled on the couch and watched a show way past bedtime. I know this week hasn't been easy on Lennon or Shi, but they have been troopers. Hoping we are all back together soon. (Oh!! And I started a new blog! I will put the link in the profile!) #raisingasisterhood #specialneedsmom #tuberoussclerosiscomplex #giveanythingbutup
  • I got to be home with my little girls tonight. It was refreshing and fun. We had a special snack, snuggled on the couch and watched a show way past bedtime. I know this week hasn't been easy on Lennon or Shi, but they have been troopers. Hoping we are all back together soon. (Oh!! And I started a new blog! I will put the link in the profile!) #raisingasisterhood #specialneedsmom #tuberoussclerosiscomplex #giveanythingbutup
  • 104 5 19 May, 2017
  • Here is a case of a 2 YO male diagnosed with tuberous sclerosis complex via CT head and MRI brain who was initially referred to  Hamilton Eye Institute's neuro-ophthalmologist for a vision evaluation. During the visit, the patient's mom complained of L upper eyelid fullness and discoloration over the past year. On palpation, there was no discrete mass but superficial and deep texture was appreciated. Ultrasound revealed a solid, well-circumscribed vascular lesion. Upon excision of the lesion, the pathology report revealed thick-walled vessels lined with endothelial cells, fat tissue, and smooth muscle consistent with cutaneous angiomyolipoma. All other documented cutaneous angiomyolipomas are considered fat-derived tumors, HMB-45 negative, and not associated with TSC. This patient had a rare occurrence of cutaneous angiomyolipoma that was of a vascular origin, HMB-45 positive, S-100 negative, and associated with TSC. #hamiltoneyeinstitute #theeyeshaveit #tuberoussclerosiscomplex #TSCawareness #ocularpathology
  • Here is a case of a 2 YO male diagnosed with tuberous sclerosis complex via CT head and MRI brain who was initially referred to Hamilton Eye Institute's neuro-ophthalmologist for a vision evaluation. During the visit, the patient's mom complained of L upper eyelid fullness and discoloration over the past year. On palpation, there was no discrete mass but superficial and deep texture was appreciated. Ultrasound revealed a solid, well-circumscribed vascular lesion. Upon excision of the lesion, the pathology report revealed thick-walled vessels lined with endothelial cells, fat tissue, and smooth muscle consistent with cutaneous angiomyolipoma. All other documented cutaneous angiomyolipomas are considered fat-derived tumors, HMB-45 negative, and not associated with TSC. This patient had a rare occurrence of cutaneous angiomyolipoma that was of a vascular origin, HMB-45 positive, S-100 negative, and associated with TSC. #hamiltoneyeinstitute #theeyeshaveit #tuberoussclerosiscomplex #TSCawareness #ocularpathology
  • 130 2 12 September, 2017
  • 🄵🅁🄸🅈🄰🅈 🥳 🎉 
Die Woche ist geschafft! Meine Aphte geht weiter zurück und heute ist der 2. Tag meiner 5mg – Evorolimus Action.
Ich bin für jeden weiteren Tag dankbar, an dem ich die Tabletten gut vertrage. 
Viele fragen mich, warum ich so positiv bin und viele lächeln, wenn ich sage „Hauptsache mir geht es gut und ich bin gesund“ (verständlich auch nach einer Hirn-OP, fünf Lungen-OP‘s, einem Herzklappenfehler und diversen Tumorabtragungen im Gesicht sich als gesund zu bezeichnen ...)
Es ist so. Ich fühle mich gesund, ich kann laufen, essen, reden, mich artikulieren, hab eine Arbeitsstelle, ein soziales Umfeld, dass ich sehr schätze und  sehe jetzt vlt. nicht sooo scheiße aus, dass ich eine Tüte über dem Kopf tragen müsste und kann mein Leben schon normal  leben.
Meine Schmerzen in der Lunge ja meine Güte – joggen kann ich nicht gehen (ja zum Glück hab ich ne gute Ausrede warum nicht .. haha) - es ginge auch noch viel viel schlimmer…
Also was will ich mehr?
 Seid dankbar für das, was ihr habt. Rennt nicht immer dem hinterher, was womöglich für Euer einziges Glück verantwortlich ist.
Ich höre oft „Wenn ich das Auto habe, … wenn ich eine größere Wohnung haben könnte … wenn wenn wenn ..
Haltet Euch vor Augen, bis wohin ihr JETZT gekommen seid. Seid stolz darauf, und gebt Euch mal die Möglichkeit JETZT zufrieden zu sein. 
Als ich mal wieder im Krankenhaus war, habe ich gemerkt, alles was Du brauchst ist nicht käuflich (außer das WLAN und ich schwöre, es ist wichtig 😂)
Menschen um Dich rum, die Dich besuchen, Dir ihre Zeit schenken und mit Dir reden, lachen und weinen.
Mehr braucht man nicht, ein Dach über dem Kopf, etwas zu essen und trinken, wahlweise eine Thoraxdrainage und Menschen! Damit seid ihr reicher als jemand, ausschließlich mit Wertbesitz. 
Habt ein wundertolles Wochenende!! Sissi ♡
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#me #shorthair #girl #glasses #office #brownhair #tuberoussclerosis #smile #live #love #blogger #fashion #fashioninspo #tuberoussclerosiscomplex #munich #cozy #instadaily #instagramers #igers #germanblogger #bloggergirl #followme #daily #instalike #instagood #word #instaquotes #tgif #friyay #weekend
  • 🄵🅁🄸🅈🄰🅈 🥳 🎉
    Die Woche ist geschafft! Meine Aphte geht weiter zurück und heute ist der 2. Tag meiner 5mg – Evorolimus Action.
    Ich bin für jeden weiteren Tag dankbar, an dem ich die Tabletten gut vertrage.
    Viele fragen mich, warum ich so positiv bin und viele lächeln, wenn ich sage „Hauptsache mir geht es gut und ich bin gesund“ (verständlich auch nach einer Hirn-OP, fünf Lungen-OP‘s, einem Herzklappenfehler und diversen Tumorabtragungen im Gesicht sich als gesund zu bezeichnen ...)
    Es ist so. Ich fühle mich gesund, ich kann laufen, essen, reden, mich artikulieren, hab eine Arbeitsstelle, ein soziales Umfeld, dass ich sehr schätze und sehe jetzt vlt. nicht sooo scheiße aus, dass ich eine Tüte über dem Kopf tragen müsste und kann mein Leben schon normal leben.
    Meine Schmerzen in der Lunge ja meine Güte – joggen kann ich nicht gehen (ja zum Glück hab ich ne gute Ausrede warum nicht .. haha) - es ginge auch noch viel viel schlimmer…
    Also was will ich mehr?
    Seid dankbar für das, was ihr habt. Rennt nicht immer dem hinterher, was womöglich für Euer einziges Glück verantwortlich ist.
    Ich höre oft „Wenn ich das Auto habe, … wenn ich eine größere Wohnung haben könnte … wenn wenn wenn ..
    Haltet Euch vor Augen, bis wohin ihr JETZT gekommen seid. Seid stolz darauf, und gebt Euch mal die Möglichkeit JETZT zufrieden zu sein.
    Als ich mal wieder im Krankenhaus war, habe ich gemerkt, alles was Du brauchst ist nicht käuflich (außer das WLAN und ich schwöre, es ist wichtig 😂)
    Menschen um Dich rum, die Dich besuchen, Dir ihre Zeit schenken und mit Dir reden, lachen und weinen.
    Mehr braucht man nicht, ein Dach über dem Kopf, etwas zu essen und trinken, wahlweise eine Thoraxdrainage und Menschen! Damit seid ihr reicher als jemand, ausschließlich mit Wertbesitz.
    Habt ein wundertolles Wochenende!! Sissi ♡
    .
    .
    .
    .
    _________________________
    #me #shorthair #girl #glasses #office #brownhair #tuberoussclerosis #smile #live #love #blogger #fashion #fashioninspo #tuberoussclerosiscomplex #munich #cozy #instadaily #instagramers #igers #germanblogger #bloggergirl #followme #daily #instalike #instagood #word #instaquotes #tgif #friyay #weekend
  • 247 23 18 January, 2019

Latest Instagram Posts

  • I have learned throughout the years for the things that happen to me I’m not even surprised or shocked or scared anymore. 
Sunday February 17th was a really off day for me. I had a headache all morning, I was stressed to the max. I bent down and all of a sudden, my eye starts bleeding from the corner of my eye. Then, my nose started bleeding. I only get nose bleeds from the meds and the weather, but never the eye. And it hurt lots, made the headache behind my eye really bad. I also got really Nauseous. 
Do any of my followers experience bad nose bleeds? Or even eye bleeds as well?? #tuberoussclerosiscomplex #invisibleillnessawareness #eyebleed #nosebleed #chronicillness #anemic #delayedhealing #weakimmunesystem
  • I have learned throughout the years for the things that happen to me I’m not even surprised or shocked or scared anymore.
    Sunday February 17th was a really off day for me. I had a headache all morning, I was stressed to the max. I bent down and all of a sudden, my eye starts bleeding from the corner of my eye. Then, my nose started bleeding. I only get nose bleeds from the meds and the weather, but never the eye. And it hurt lots, made the headache behind my eye really bad. I also got really Nauseous.
    Do any of my followers experience bad nose bleeds? Or even eye bleeds as well?? #tuberoussclerosiscomplex #invisibleillnessawareness #eyebleed #nosebleed #chronicillness #anemic #delayedhealing #weakimmunesystem
  • 9 5 19 February, 2019
  • This disease is my main one. It triggers all the other smaller problems. 
Like most babies, I was diagnosed when I was still in my mother’s womb. I had a tumour in the left ventricle of my heart. Since Tuberous Sclerosis is so rare (1 in 10,000) the doctors told my parents to prepare for my funeral. But I am still here! This disease causes benign tumours to grow all over the vital organs and disrupt your development. 70% of all reported cases of Tuberous Sclerosis are Type 2 (the first in the family to have it). If a person with Tuberous Sclerosis becomes a parent, their child has a 50% chance of getting it as well and having it worse. Tuberous Sclerosis is really awful. There’s way more facts about it that you possibly couldn’t know, and I’ll tell you exactly how this affects a persons life through my eyes. How many of my followers have Tuberous Sclerosis? If so, comment with the emoji 🙋‍♀️ #throughthelookingglass #myeyes #perspectives #findacure #tuberoussclerosiscomplex #tsc1 #tsc2 #life #raredisease #diagnosed #8monthspregnant #benigntumor #lifesuckssometimes #sensitive #unique #invisibleillnessawareness #genetic
  • This disease is my main one. It triggers all the other smaller problems.
    Like most babies, I was diagnosed when I was still in my mother’s womb. I had a tumour in the left ventricle of my heart. Since Tuberous Sclerosis is so rare (1 in 10,000) the doctors told my parents to prepare for my funeral. But I am still here! This disease causes benign tumours to grow all over the vital organs and disrupt your development. 70% of all reported cases of Tuberous Sclerosis are Type 2 (the first in the family to have it). If a person with Tuberous Sclerosis becomes a parent, their child has a 50% chance of getting it as well and having it worse. Tuberous Sclerosis is really awful. There’s way more facts about it that you possibly couldn’t know, and I’ll tell you exactly how this affects a persons life through my eyes. How many of my followers have Tuberous Sclerosis? If so, comment with the emoji 🙋‍♀️ #throughthelookingglass #myeyes #perspectives #findacure #tuberoussclerosiscomplex #tsc1 #tsc2 #life #raredisease #diagnosed #8monthspregnant #benigntumor #lifesuckssometimes #sensitive #unique #invisibleillnessawareness #genetic
  • 10 1 18 February, 2019
  • Initiations grow us giving us strength, trust and faith, and hone our intuition. Motherhood full of joy and love started with an unimaginable initiation. When I see her, I see her completeness and not her condition. I see healing and potential. This initiation has changed me. I became a mother with another purpose. A purpose to live life differently with gratitude, unconditional love and spirit as my anchor. This is where I find strength amidst the unknowns. And, to remember healing is embodied in all of us. ❤️ As we travel to get to her MRI, I align to the bright waves of possibility and healing. She and I have chosen this healing path together. ❤️ Here’s to love and finding the light. #tuberoussclerosiscomplex #motherhood #healing #gratitude #positivevibes #lifecoach #fbf
  • Initiations grow us giving us strength, trust and faith, and hone our intuition. Motherhood full of joy and love started with an unimaginable initiation. When I see her, I see her completeness and not her condition. I see healing and potential. This initiation has changed me. I became a mother with another purpose. A purpose to live life differently with gratitude, unconditional love and spirit as my anchor. This is where I find strength amidst the unknowns. And, to remember healing is embodied in all of us. ❤️ As we travel to get to her MRI, I align to the bright waves of possibility and healing. She and I have chosen this healing path together. ❤️ Here’s to love and finding the light. #tuberoussclerosiscomplex #motherhood #healing #gratitude #positivevibes #lifecoach #fbf
  • 73 10 8 February, 2019
  • I have always loved working out. Being active is so very important to me and helps me more than just physically. It wasn’t until more recently that I became more consistent in working out. It was all because someone saw in me what I always knew was there. I am becoming more confident in myself and learning to love myself more than I ever thought possible. 
Yes of course I was I was skeptical at first. Will this actually work? Can I stick to this? What makes these programs and products so special?

All of those questions continue to be answered the more I believw in myself and work with others in accountability groups in order to achieve my goals alongside others.

If ever you have wondered what I am doing, if you could do it, or just wanted to give it a try. Please reach out to me! 
This coaching thing is and will continue to change my life. Let me help you change yours too!
  • I have always loved working out. Being active is so very important to me and helps me more than just physically. It wasn’t until more recently that I became more consistent in working out. It was all because someone saw in me what I always knew was there. I am becoming more confident in myself and learning to love myself more than I ever thought possible.
    Yes of course I was I was skeptical at first. Will this actually work? Can I stick to this? What makes these programs and products so special?

    All of those questions continue to be answered the more I believw in myself and work with others in accountability groups in order to achieve my goals alongside others.

    If ever you have wondered what I am doing, if you could do it, or just wanted to give it a try. Please reach out to me!
    This coaching thing is and will continue to change my life. Let me help you change yours too!
  • 22 3 8 February, 2019