Questionnaire for Tuberous Sclerosis Complex

Hi All, 

 

On the 5^th 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

 

 

 

Back to School?

Dear parents,  

 

Are you concerned about sending your child back to school?  

Covid 19 has thrown many of us into a somewhat negative slump. We have begun to question the safety and certainty of our lives, as well as the lives of our children. We don’t know if our spouses will have work in the near future. We don’t even know when schools will reopen (if schools will reopen at all). However, instead of panicking, why not turn this uncertainty into a positive? Why not take your child’s learning into your own hands? Why not start home-schooling?

I suppose you are wondering what home-schooling is. According to the Policy on Home Education 2018; “The character of Home Education represents and honours the parents’ wish to personally facilitate the education of her or his child in the family home.” Therefore, as a homeschooling parent you take full responsibility for your child’s education. You will therefore be permitted to teach your child anything, in any way as long as it is not inferior to the standard of education in public schools. You can either teach your child personally, or you could hire a tutor to do so.  

          

Sounds appealing right? The next question would then be, “Where do you start?”. You as the parent or guardian, must apply to the Head of your Provincial Department of Education to register. This can be done by filling in a form online at- www.education.gov.za. As a homeschooler you may want to make use of a curriculum provider such as Edu-Croft. https://www.educroft.com/  

What advantages does homeschooling give me? 

As a homeschooler my whole life, I have many stories I could share with you. Many experiences and techniques which one could say, have given me an advantage in my adult life. For instance, Homeschooling allowed me to learn about the world through literature. Reading, writing and arithmetic were the three most important things we focused on while I was growing up. We would read novels such as ‘Hans Brinker and the Sliver Skates’, after which we would study the history and geography of Holland. Following this, we would then write summaries of what we had read or diary entries about what we had learned throughout the day.  

 

My mother taught us routine and organisational skills by helping create and stick to daily schedules. These would include household chores, general hygiene and neatness, before beginning school at 08h00 each morning. Having a designated study area outside of our bedrooms, programmed our minds to focus while sitting at our desks. In contrast relaxing would take place in our rooms; therefore, concentration was not a problem.  

 

All this time together helped contribute to the close relationship my brothers, mother and I now share. We were and still are, a close family. Having good communication with my family allowed my mother to keep an eye on my health. Hospital visits became field trips (of which there were many). Doctors’ appointments became Doctors’ interviews: we would ask them questions about their procedures, motivations, and inspirations. Trips like these prevented anxiety because the focus was on understanding the science. 

 

 Homeschooling has made me who I am today. I value learning and education and I have worked in Early Childhood Development as a Directress and as a Highschool tutor. These are some of the best decisions I ever made. Studying will always be a lifelong pursuit for me. My brothers and I have powerful levels of self-discipline which influences our own work ethics – motivating us to perform to the best of our ability; intellectually, emotionally and physically.  

 

Are these not life skills and qualities you would hope to instil in your children? Homeschooling is an effective vehicle to accomplish this.   

TSC Indaba 2018!

On the 17th of November, I was scrolling through Face-book when something caught my eye; "TSC Indaba UCT 24th November 2018". What particularly excited me were the words; "We invite you to join...families and individuals who live with Tuberous Sclerosis Complex (TSC)". Now please understand, I'm 24-years-old, throughout my childhood (and brief adulthood), I have met many people with epilepsy and other genetic disorders, however, I have only met one other person with TSC. So to be offered the opportunity to meet "families" truly excited me. Not to mention the world renowned Prof. Petrus de Vries was going to be there! The last time I read about a conference that he attended, it was in Washington D.C, therefore, I was not planning to miss this Indaba. My mind was made up.

The Indaba was amazing! It is a kind of informal meeting, there were seven families, myself along with three speakers; who updated us on the latest and greatest new in the field of TSC. Everybody shared their journeys thus far. It was fascinating to here everybody's experiences, especially how different a father's experience is to a mother's experience in all cases. 

As we spoke, Prof. de Vries took note of questions, concerns and expectations. The ones I can recall are the following;

• What can parents expect in there child's future? (in terms of development, schooling, medicine, adapting into society and so on)
• Requesting more parental support, such as; availability of information and meetings. 
• To build a TSC family or community.
• To work towards better support systems for adults with TSC. 
• How to make the transition from adolescence to adulthood in terms of doctors more simple.
• How to integrate adults with TSC into society, in terms of finding accommodating jobs and in some cases educated and willing care takers.

I found these points interesting, some had not even crossed my mind before. I hope that in some way, I may help in some of these areas. Prof. de Vries as well as the other speakers seemed excited at the progress of the Indaba and were excited to begin innovating some ideas to accommodate future generations concerning these points. I am truly excited for what the future holds. 

I would like to extend a huge thank you to:

• Professor Petrus de Vries 
• Professor Regan Solomons 
• Dr. Birgit Schlegel 
• Max de Vries     

 Looking forward to the next gathering. If anybody in the audience is in the Gauteng area, who would like to have a similar gathering, please leave a comment below, so that arrangements may be made. Kind Regards Alexis Minnaar.
             

Tuberous Sclerosis South Africa

Do you Embrace Life, or Fear it?

People all around the world, are judged, criticized, and compared by others on a daily basis. People are always feeling this constant pressure, to be perfect. Parents and children, with any type of chronic disease, end up being incredibly self conscious about themselves. TSC more often then not, causes outward manifestations on the surface of the skin; i.e. Angiofibromas (facial lesions), and Hypopigmented Macules (white leaf shaped patches on the limbs). These outward "side effects" cause us to stand out more. Consequently, human nature, causes us to be a bit more paranoid than our peers.

When I was eighteen, I asked my father, if at any stage he was ashamed of my condition. His response surprised me. "Yes," he said in deep contemplation, "I was embarrassed for you, watching people stare at you. People are stupid, it really irritates me, because the are ignorant, they are always suggesting things; "have you seen this dermatologist?" or "here let us pray for you". As your father I feel as though I have to fix your face. But even if I was a millionaire I would not be able to fix your face." As a parent you want to protect your child, or children, you want to help them, or "fix" them. This is understandable. 

I had fallen in love, with the Montessori method, because of her focus on independence. Allow me to explain. As a parent, you feel the need to protect your child, this we have established. However, (based on observation) I have come to realize, there is a thin line between protecting and coddling children. Unfortunately, coddled children posses the following characteristics; firstly, laziness; "Oh, I can't learn to do that, because I have TSC." Secondly, Fear; "Oh no! am I allowed to bake? What if I have a seizure and burn myself? Am I allowed to swim? What if I have a seizure and drown?" And thirdly, manipulation; "Stacy's mom, my blood sugar has dropped, if you don't give us desert, I'm going to have a seizure." Please understand what I am trying to say. Children do not have to have a chronic disease the develop these traits. However, it is easy for children with a chronic disease such as TSC to develop a victim mentality. 

Once this happens, you end up with another problem; low confidence. What people have called "low confidence" is actually just fear... allowing fear to control you, which brings us back to independence. I'm not saying, do not keep your children safe, I'm saying allow them to experience life. even simple things make a difference. "Here Sweetie, you carry your school bag today." "Wow! Josh, you climbed the rope ladder all by yourself!" "Here, it is your turn to flip the pancake Stacy." Why? Why do this? Well, if their is one thing I know it is this; blaming people is easy, blaming a disease is easier. It becomes an excuse to hide, and the more you hide, the more difficult is to smile. I'm not talking about a mask, I'm talking about sincerity, it become difficult to be sincere. The best thing my parents ever did, was teach me independence, never hide, stay honest, stay in communication, and stay kind. You get two types of parent - One who embraces life, and one who fears it...

Which one are you?