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
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