Living with TSC; Never a Dull Moment

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Living with TSC; Never a Dull Moment

Living with Tuberous Sclerosis Complex, may seem daunting, maybe even impossible. But it doesn't hav Hi There! I am the eldest out of three children.

I'm Alexis Minnaar, I work as an English and Geography tutor at DawnCroft Education. At the age of nine months, I was diagnosed with temporal lobe epilepsy. Followed by a confirmation diagnosis of the Tuberous Sclerosis Complex, at the age of two. Thus my journey, as well as my parent's journey began. With two younger brothers; Jordan (two years younger) and Ezra (nine years younger) both in perfect health. Ever since I can remember, my parents have always been incredibly informative with regards to my condition. Neither my brothers nor I, have been left in the dark with regards to my disorder. A strong belief dwells within our house, that not knowing leads to fear and even rebellion. Consequently age appropriate explanations have always been given to us, along with our family, and friends as we grew up. By the age of seventeen, I began to do my own research. As time passed, I found that hope and courage grew along with the knowledge I gained. Unfortunately a cruel realization occurred to me as I searched; firstly it is easy for people to see and dwell on the negative experiences that we go through. It is in our nature to take the easy way out; blaming other people, running away, or even feeling sorry for ourselves. However this leads to a very lonely and difficult journey. My husband once said; "Sit down and think of all the things you have accomplished in your life, even if they are small." Think of it this way; you are sitting in a house cluttered to the ceiling. You begin to clean it, and after ten years the house is still a mess. Look at what you have accomplished. You can see the floor, your cloths are in the cupboard, and you can use the bathroom. We cannot allow our hindrances to stop us from seeing a future. Secondly, there are no awareness or support groups to confide in, in South Africa. News such as this is disheartening. It is always pleasant to confide in someone, whether it is your parents, your doctor, or your husband. Therefore I wish to share my story of hope with you. In the hopes that you would find the strength to share yours too. Creating awareness, as well as finding support within each-others experiences. By reflecting on our experiences we thus realize how much we truly have accomplished throughout our journeys. But it doesn't have to be... There is never a dull moment, when you have hope and courage to guide you.

19/10/2022

Hi All,
Please look at the pamphlet, it would be amazing if you would join us. 🤩

Link below is for the registration form. 🤗
https://forms.gle/RC5eyo4SjTSqeCNk8

11/10/2022

Don't wait - register today!

Thank you for registering for the TANDem Impact Event. Please complete the form to help us understand who you are and what you would like to get out of the day.

11/10/2022

Time is flying! The 5th November is around the corner!
Save the date.

Alexis Minnaar An Jansen Stellenbosch Institute for Advanced Study

5 November is around the corner! More details to be posted in the next few days.
Alexis Minnaar An Jansen Stellenbosch Institute for Advanced Study

11/10/2022

Hey all! Below is the information about this first-of-its-kind event. Please share the news far and wide!
The Google Form for registration will be posted separately.

Rare Diseases South Africa NPO 120-991 Alexis Minnaar An Jansen Shoba Srivastava Stellenbosch Institute for Advanced Study

As promised! Herewith the information about this first-of-its-kind event. Please share the good news far and wide!
The Google Form for registration will be posted separately.

Rare Diseases South Africa NPO 120-991 Alexis Minnaar An Jansen Shoba Srivastava Stellenbosch Institute for Advanced Study

20/08/2022

Questionnaire for Tuberous Sclerosis Complex

Hi All,

On the 5th of November 2022, there will be a TSC conference in Stellenbosch. Attending are roughly 20 TSC professionals. Thus, in preparation for this I am kindly asking you to participate in some research.

This questionnaire is a tool I’m using to understand your needs and concerns. Please take the time to answer the following questions.

Your insight is greatly appreciated.

Surname Name: ___________________________________Anonymous

South African Province: _______________________________________________________

Do you or your child have TSC? _________________________________________________

1. Has it be easy to find medical professionals with sufficient knowledge of this disorder? ________________________________________________________________________________________________________________________________________

2. How did you find your current medical professional? _______________________________________________________________________________________________________________________________________

3. Do medical professionals openly give you explanations concerning:
a. Medications (use and side effects): ____________________________________________________________________________________________________________________________
b. Research:
____________________________________________________________________________________________________________________________
c. Testing techniques: ____________________________________________________________________________________________________________________________

d. Is Information on TSC easily and freely available to you? ____________________________________________________________________________________________________________________________

4. What TSC Symptoms are you dealing with?

a. Skin:
i. Hypomelanic Macules (white patches)
ii. Angiofibromas (a facial rash)
iii. Shagreen Patches (a thick skin patch)
iv. Ungual Fibromas (growths on/under finger & toe nails)

b. Organ Growths
i. Cardiac Rhabdomyomas (growths on the heart)
ii. Cartical tubers and/or Subependymal nodules on the brain
iii. Angiomyolipomas on the kidneys
iv. Lymphangioleiomyomatosis (growths on the lungs)

c. Epilepsy Yes No

i. Type: ______________________________________________

ii. How do you record the severity frequency your child’s seizures? ________________________________________________________________________________________________________________

d. Autism: Yes No

i. Type: _____________________________________________

ii. Do you keep a log of autistic episodes; of type and frequency? ________________________________________________________________________________________________________________

5. What is your TSC budget (per month)? ____________________________________

a. Doctors and Therapists ___________________________________________
b. Scans ________________________________________________________
c. Medication ____________________________________________________
d. Medical Aid: ___________________________________________________

6. What is your greatest concern what it comes to TSC? ____________________________________________________________________________________________________________________________________________________________________________________________________________

7. Which scans do you tend to do most often?

a. Medical Resonance Imaging (MRI)
b. Computed Tomography Scans (CT/ CAT)
c. Electroencephalogram (EEGs)

d.Optic scans ____________________________________________
e.Audio Scans ___________________________________________
f. Allergies______________________________________________

8. Do you have a strong support system around you? Yes No

a.Professionals ________________________________________
b. Therapists____________________________________________
c. Friends_______________________________________________
d. Family________________________________________________

9. Have you found there is discrimination toward you or your child? Yes No

a.Explain the type: ________________________________________

i. Social _________________________________________________
ii. Emotional___________________________________________
iii. Educational__________________________________________
iv. Environmental_________________________________________

b. Which of the above causes the most strain for the TSC individual?
____________________________________________________________________________________________________________________________

i. Give further details. ________________________________________________________________________________________________________________________________________________________________________

10. Elaborate on the education for your children.

a. Was it simple to find a school for them? Yes No
b. Do they have Developmental Delay? Yes No
c. Do they struggle with Behavioural Difficulties? Yes No
d. Is the school suited to deal with medical disorders? Yes No

Thank you for participating in this survey. We aim to answer many of these questions in the conference, in the hopes of providing a more supportive and inclusive service to TSC families in South Africa.

Kindest Thanks.

Alexis Minnaar

Founder of:
Living With TSC; Never a Dull Moment

Cell Phone: 078 339 2325
Email: alexisbilyard7@gmail.com

08/05/2022

Alexis is very happy to be back home again! Time to rest and recover ❤️

02/05/2022

30/04/2022

Alexis 🌺 was discharged from hospital today! Please continue to pray as she recovers.
♥️ Her PA, Dez.

12/04/2022

Alexis 🌺 has been in hospital since last Friday, all meticulously planned! Please continue to pray for her, her family and the team involved 🙏🏻
💓 Her PA, Dez.

31/03/2022

Alex 🌺 arrived in CT this past Tuesday.
Please spam this post with love 💓 and prayers🙏🏻 for answers from the Specialists.
Her PA, Dez. 😘

26/03/2022

26 March '22 Today is World Epilepsy day.

28/02/2022

28 Feb '22 Today is Rare Disease Day all over the world! These are our beautiful TSC Warriors from South Africa!

28/02/2022

Happy Happy Rare Disease Day from Dawncroft Education!! Wishing you a wonderful Monday!

28/02/2022

Happy Happy Rare Disease Day from EduCroft Tutors!! We are wishing you all a marvellous Monday!

23/02/2022

Let's just ride one wave at a time!

20/02/2022

14/02/2022

Happy International Epilepsy Day everyone!! International Epilepsy is the second Monday in February. 💜 💜

11/02/2022

Dez Struwig post:
11 Feb '22 Today we finally had the opportunity to meet Alex! We have been friends for over two years and were finally able to chat in person while she was in CT. Alex lives with TSC just like Rachel and Nathan do! Amazing to listen to her experiences and life story! We loved having you with us, Alex!

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