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Individuals & Families

Young Adults

Below are resources especially for young adults with tuberous sclerosis complex (TSC). If you have questions or need to speak with someone, please call the TSC Alliance toll-free at 1-800-225-6872. You can find general adult resources here.

TSC Alliance Future Leaders Program

The TSC Alliance® Future Leaders Program is a group of individuals ages 17 through 27 including young adults with TSC, siblings of someone with TSC, or other relatives of someone with TSC  who are dedicated to building community leadership skills through volunteerism. The Future Leaders program is committed to empowering young adult leaders through mentorship, volunteer services and grassroots advocacy to help develop community-minded change makers and leaders.

Future Leaders will meet monthly to plan and implement young adult volunteer projects, develop strong communication through online and in-person events, and participate in grassroots advocacy initiatives throughout the calendar year (Jan 1, 2023 – Dec 31, 2023) .

If you are between the ages of 17 and 27 and are a young adult with TSC, a sibling, or a TSC relative and are interested in finding a place where you can make new friends, learn valuable leadership skills, and make a difference, the Future Leaders Program is great opportunity to get involved and we are excited to meet you!

The application for the 2024 Future Leaders Class will be available later this year.

Publications

2017 Transition Workshop Presentations

New York City

  1. Welcome
  2. Medical Transition and Toolkit presented by Rebecca Schultz, PhD, RN, CPNP
  3. Educational Issues and Transition to Community presented by Dena Hook
  4. Social, Housing and Employment Opportunities presented by Deanna M. Eble, Esq.

San Diego

  1. Medical Transition Guidelines and Toolkit presented by Ann Tilton, MD
  2. Transition from School to Community presented by Dena Hook
  3. Guardianship and Financial Planning presented by Kelly Piacenti
  4. The Origins of TSC Mutations: A Family-Based Genetic Study Invitation presented by Joseph Gleeson, MD

Online Transition Tools

Audio Resources

Online Search Tools

Helpful Links

The Arc — The TSC Alliance has a formal partnership with The Arc, which promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes. They provide advocacy, training, and support services for people with intellectual and developmental disabilities through local Arcs.

Bender Consulting Services — Consulting firm that specializes in recruiting and hiring people with disabilities for full-time, competitive employment opportunities

Assisted Living Care — Online resource for loved ones needing assisted living options.

Additional Resources

Tips for Choosing Health Insurance

Step 1: Understanding Your Health Care Needs

The first step in choosing health insurance is understanding the type of health care you need for your TSC.  Download this worksheet to help you keep track of which TSC symptoms you have, which doctors, nurses or other therapists you see, which hospitals you may need to go to, and which medicines you currently take, or may need to take in the future.  You can also use the worksheet to list other health conditions for which you need care.

Step 2: Understanding Different Types of Insurance

HMO – Health Maintenance Organizations

  • Network of doctors and hospitals
  • Have a co-pay
  • You must select a primary health care provider (doctor) from their network
  • Primary health care provider will coordinate all of your care to other specialists
  • You will pay out of pocket if you choose treatment from non-network specialists or hospitals
  • Insurer will pay for emergency room treatment without referral
  • May include a prescription drug benefit

PPO – Preferred Provider Organizations

  • Network of doctors and hospitals
  • Have a co-pay
  • Do not have to pick a primary health care provider
  • You do not need a referral to see a specialists
  • You will pay out of pocket the difference in cost between in-network doctors/hospitals and out-of-network doctors/hospitals
  • May include a prescription drug benefit

POS – Point-of-Service Plans

  • Must select a primary health care provider (doctor) from their network
  • You can choose to go out of network (but you will pay most of the cost)
  • If primary healthcare provider refers you to an out-of-network doctor, insurance will pay all or most of the cost

Prescription Plans

Both HMOs and PPOs can offer prescription plans.  Most insurance plans have co-pays for prescriptions.  The out-of-pocket cost for each monthly prescription can be as low as $5 and up to the whole cost of the drug.  Co-pays are usually higher for brand name drugs than for generic drugs.  Depending on your doctors’ recommendation generic drugs may not work as well for you.  Make sure to discuss name brand vs. generic medications with your doctor before choosing a health insurance plan.

Step 3: Finding More Information About Your Health Insurance Options

Many working people get their health insurance through their employers. If your employer offers health insurance, you should receive information from your employer about your health insurance options.  Regardless of whether they work, some people with lower incomes may be eligible for public insurance programs, such as Medicaid.  To find out whether you are eligible for Medicaid in your state, go to www.medicaid.gov.

If you do not have access to health insurance through your job or a public program like Medicaid, you can shop for health insurance on the new “health insurance exchange market place” that were started under the “Patient Protection and Affordable Care Act,” also called “Obamacare.”  Obamacare makes it illegal to deny insurance coverage to individuals with pre-existing health conditions like TSC. To access the insurance market place and find an insurance policy that fits your needs, go to  https://www.healthcare.gov/marketplace/individual/ or call 1-800-318-2596.

Step 4: Choosing a Health Insurance Plan

The following questions are important to consider as you choose an insurance plan.

General

  • Is your medical center (the place where your doctor practices) in-network or out-of-network?
  • Is there an individual and/or family deductible?
  • Do I have co-pays and/or co-insurance? If so, what is the amount of each?
  • Does my deductible count toward my out-of-pocket maximum?
  • What is my overall individual/family out-of- pocket maximum?
  • Do I need to have any visits, tests, or other services pre-certified or authorized prior to the service being done?

Inpatient (Hospital Care) Benefits

  • Do I have a yearly or life-time max on inpatient visits?
  • Are there any additional costs associated with an inpatient stay?

Outpatient (Non-Hospital Care) Benefits

  • What is my physician copayment for primary care physician and or specialist?
  • What additional charges are there for outpatient visits?
  • Is there a facility charge associated with the hospital where I see the doctor (even if I’m not hospitalized?
  • How many occupational therapy, physical therapy, and speech therapy visits do I get per person per year?

Prescription Benefits

  • Are the drugs I’m currently on, or the ones the doctor thinks I might be on one day, covered under the plan?
  • What are my prescription benefits for brand name and generic drugs?
  • Are there any limitations on which prescriptions I can get?
  • What is my out-of-pocket maximum on prescription drugs?
  • If I am already on a brand-name drug (because I tried other generic drugs and they did not successfully treat my condition) will I need to re-try generics on the new formulary prior to being reimbursed for my current drug?

Emergency Room/Urgent Care

  • What is my out-of-pocket cost for visiting the emergency room/urgent care center?

Resources

Healthy Eating

As a young adult with TSC it is important for you to be concerned about your nutrition and develop healthy eating habits. TSC can make managing your overall health complicated; however, helping your body by eating healthy can help you avoid adding other health issues associated with overweight, obesity and poor eating habits. Four of the ten leading causes of death in the U.S. are heart disease, cancer, stroke and diabetes; all of which can be related to what you eat.

Up to 85% of individuals with TSC will develop epilepsy in their lifetime. In addition to epilepsy, depression and anxiety are common in individuals with TSC. Many anti-seizure, anti-anxiety and anti-depressant medications can cause weight gain and increase appetite. For some, food can become an emotional prop when dealing with depression and anxiety. Because you are a young adult now is the right time to start developing good eating habits and a healthy life style to avoid the pitfalls of overweight and obese related illness.

Healthy Eating Tips

  • Using smaller plates will help in potion control.  When filling you plate make sure you plate is filled half with vegetables.  Use vegetables in you main dishes as well such as egg plant lasagna or stuffed peppers.
  • Cut back on unhealthy snacks such as cookies, potato chips, fast foods, and over processed foods.  These snacks are not only bad for you but they are expensive (link to Health Grocery Shopping here).  Vegetables are great for snacks use balsamic vinegar as a dip instead of high calorie dips made with sour cream.  Fruits are also a great snack they can curb you sweet tooth and be healthy at the same time.
  • Eat the right amount of calories for you.  Every person burns a specific number of calories a day depending on their age, body build, and activity level.  Calculate your daily calorie needs online.

Understand How to Read Food Labels

foodlabels

Most packaged foods have a Nutrition Facts label and an ingredients list. For a healthier lifestyle, use this tool to make smart food choices quickly and easily.

Check for calories. Be sure to look at the serving size and how many servings you are actually consuming. If you double the servings you eat, you double the calories.

Choose foods with lower calories, saturated fat, trans fat, and sodium.

Check for added sugars using the ingredients list. When a sugar is close to first on the ingredients list, the food is high in added sugars. Some names for added sugars include sucrose, glucose, high fructose corn syrup, corn syrup, maple syrup, and fructose.

Other Online Resources

Reproductive Decision Making and TSC

Deciding to start a family or grow an existing family is a life-changing decision, full of excitement and hope. However, if your family medical history contains a diagnosis of tuberous sclerosis complex (TSC), that excitement and hope can give way to fear and anxiety. Fortunately, geneticists can support families on reproductive decision-making.

The geneticist, along with their team of genetic professionals, tries to meet three goals with the family: diagnosis, prognosis and recurrence risk. For the purposes of reproductive decisions, when the diagnosis of TSC is already known within a parent or family member, recurrence risk is often the most crucial information a family is seeking. A recurrence risk means the risk (or odds) that a subsequent child will be affected with the same condition.

In the case of diagnosing TSC, the genetic professional’s job is to convey the genetic facts about TSC. TSC is a genetic disease caused by a change in the TSC1 or TSC2 gene that is causing it to no longer work. The non-working gene can then be passed on to future generations. However, it is important to remember that approximately two-thirds of the time when a child is diagnosed with TSC, neither parent has TSC.

If the change in TSC1 or TSC2 that causes TSC in a family member can be detected and identified, further testing can be performed on other family members or used for prenatal testing.

Pregnancy and TSC

Many women with TSC have normal, healthy pregnancies. However, there are some potential health complications to take into consideration when a woman with TSC becomes pregnant, including an exacerbation of her disease particularly related to lung and kidney involvement.  Some women with TSC also have a disease called lymphangioleiomyomatosis (LAM) that involves a bundling of muscle cells within the lung that block air, blood and lymph vessels, thus affecting the exchange of oxygen within the lungs. For reasons not clear, this condition often worsens during pregnancy causing potentially dangerous complications for the mother and baby. Additionally, there is evidence that angiomyolipomas (TSC-related kidney tumors) increase in size during pregnancy, leading to renal complications. Therefore, it is critical for women know their renal status prior to pregnancy.

Reproductive Options

Reproductive decision making is one of the most sensitive topics a family must discuss, and the choices made are based on a family’s beliefs, values and faith. The TSC Alliance does not advocate for specific options but is committed to sharing the information so families understand all their possibilities and can make informed choices. It is important to consider that some of these options are still relatively new and very expensive. Often, health insurance will not provide coverage for fertility treatments. If it does, many times the coverage is very limited. Each alternative needs to be considered within a legal and ethical context. Attorneys specializing in family law, perinatologists, reproductive endocrinologists, and geneticists offer professional guidance in supporting families to make the choices right for them.

Prenatal Diagnosis

When the change in the TSC1 or TSC2 gene is known, testing can be performed during the pregnancy to evaluate whether the fetus will have TSC. This can be done by one of two techniques: chorionic villus sampling (CVS), which is usually performed between weeks 10-12 of pregnancy; and amniocentesis, which is usually performed between weeks 15-18 of pregnancy. Both carry a small risk of miscarriage. The risk varies depending on the center performing the procedure.

Ultrasounds can also sometimes detect findings of TSC in the fetus; however, they cannot be used to rule out TSC.

Knowing whether the baby has TSC during the pregnancy can be helpful to some families.  Some find it helpful so they can make preparations for medical care, such as where they will deliver and what doctors they will see. Others also find it helpful emotionally. Although a very difficult decision, and depending on circumstances, some families will choose not to continue the pregnancy.

Prenatal diagnosis can give information about whether the baby has TSC; however, at this time, it cannot be used to predict what symptoms of TSC the baby will have (for example, if he/she will have seizures).

Preimplantation Genetic Diagnosis

When the change in the TSC1 or TSC2 gene is known, another option is preimplantation genetic diagnosis (PGD). PGD is technology used to identify a specific genetic change in an embryo created through in vitro fertilization (IVF) before implanting the embryo into the uterus. The purpose of PGD is to identify an unaffected embryo for implantation, thereby reducing or virtually eliminating the risk of having a child with certain genetic diseases.

There are different techniques used for certain indications and varying by center.  In general, PGD involves extracting genetic material from the embryo for analysis. Removing a cell from the embryo for genetic analysis does not hurt the embryo. The embryo compensates for the removed cell and continues to divide normally. This genetic material is then used to determine if the embryo has the change in the gene of interest.

Families with a high risk of having children with a genetic disorder or chromosome abnormalities and who wish to avoid elective pregnancy termination or to prevent the birth of an affected child following prenatal diagnosis may consider PGD. Performing genetic diagnosis prior to implantation of the embryo may reduce the potential for termination of affected fetuses diagnosed by prenatal testing.

There is no difference in pregnancy rates for couples going through IVF and PGD and couples doing IVF alone. The rates are age dependent, but as a general rule it is 30-40% per IVF cycle.

Adoption

Adoption is the process of taking a child into one’s family and building a parent–child relationship. This relationship offers all the same rights and privileges of one’s biological child. Steps to a successful adoption vary within the United States and internationally. Families typically work through private adoption agencies, social service agencies or religious organizations. Adoptions are legalized through the court system.

Surrogacy

Surrogacy is a method some couples choose as a reproductive option to create a family. It involves a legal contract whereby a woman agrees to become pregnant for the purpose of gestating and giving birth to a child for others to raise. The surrogate mother may be the baby’s biological mother (use of the surrogate’s eggs) or may be implanted with someone else’s fertilized egg.

Egg and/or Sperm Donation

When a couple is concerned about potential risk of passing on a genetic mutation through her eggs or his sperm, options are now available using donor eggs and/or sperm. Donors are available through infertility clinics and private agencies. Egg donation is done in combination with in vitro fertilization (IVF). Sperm donation can be used in combination with IVF and intra-uterine insemination (IUI).

Resources

www.resolve.org:  Provides education, advocacy, and support for people facing infertility, multiple miscarriages or having a difficult time with conception.

www.sart.org:  SART is the primary organization of professionals dedicated to the practice of assisted reproductive technologies (ART) in the United States. The mission of the organization is to set and help maintain the standards for ART in to better serve its members and patients.

www.adoptionresources.org: The primary purpose of Adoption Resources is to serve the best interests of children, so that each child will be raised in a permanent and loving family. Adoption Resources, strives to provide services that protect the dignity of children, birth parents, adoptive families, and foster families. Comprehensive services provide all those involved in adoption with support and counseling, before, during, and after placement.

www.theiar.org:  International Adoption Resources (IAR) is an unbiased resource center for hopeful adoptive parents. IAR offers a wealth of information to provide prospective adoptive parents the insights they need to make informed and educated international adoption choices. In addition to education, IAR has established both grant and corporate partner travel programs to alleviate the financial barriers to international adoption.

www.affordingadoption.com: Comprehensive resource list for people seeking financial assistance with adoption costs

www.kidshealth.org: Comprehensive resource list related to genetics and genetic counseling.

www.marchofdimes.org:  March of Dimes researchers, volunteers, educators, outreach workers and advocates work together to give all babies a fighting chance against the threats to their health: prematurity, birth defects, low birthweight.

ghr.nlm.nih.gov/: Genetics Home Reference provides overview of genetics, genes, chromosomes, and specific genetic disorders including TSC.

Updated by Hope Northrup, MD and Laura Farach, MD, University of Texas Health Science Center at Houston,  July 2017.

 

Anxiety Issues in Young Adults with TSC

Up to 50% of young adults with TSC have or will develop anxiety. (Vries PJ (2010) Neurodevelopmental, psychiatric and cognitive aspects of Tuberous Sclerosis Complex.)  As a young adult with TSC, it is common to feel anxiety over issues such as; success in college, job worries, finances, and every day stresses and worries. Individuals with TSC experience a higher rate of anxiety disorders than the rest of the population. This anxiety can manifest itself as excessive worrying, sporadic behavior, and unexplained panic attacks. Unfortunately, many young adults keep their worries to themselves and often feel very alone.

What is anxiety?

Anxiety is a normal human emotion. Many people feel anxious or nervous when faced with a problem at work, before taking a test, or when making an important decision. Anxiety disorders, however, are different. They can cause such distress that it interferes with a person’s ability to lead a normal life. For many young adults with TSC suffering from anxiety disorders, worry and fear are constant, overwhelming, and can be crippling.

What are some symptoms of anxiety?

  • Feelings of panic, fear, and uneasiness
  • Uncontrollable, obsessive thoughts
  • Repeated thoughts or flashbacks of traumatic experiences
  • Nightmares
  • Problems sleeping
  • Cold or sweaty hands and/or feet
  • Shortness of breath
  • Palpitations
  • An inability to be still and calm
  • Dry mouth
  • Numbness or tingling in the hands or feet
  • Nausea
  • Muscle tension

How do you cope with anxiety?

The first step in coping with anxiety is to know what situations trigger your anxiety.  Everyone is different and people have anxiety for different reasons. Identify what situations cause your anxiety and try some of these coping strategies:

  • Exercise – This can be anything from walking your dog to gardening. Exercise burns fat, builds muscle, and most importantly eases stress.  It doesn’t matter what you do as long as you are moving.
  • Relaxation exercise – This can be done by taking a 5-minute break from whatever is bothering you. Focus on your breathing. Sit up straight, eyes closed, with a hand on your belly. Slowly inhale through your nose, feeling the breath start in your abdomen and work its way to the top of your head. Reverse the process as you exhale through your mouth. Continue reading below…“Deep breathing counters the effects of stress by slowing the heart rate and lowering blood pressure,” says Psychologist Judith Tutin, PhD, a certified life coach in Rome, GA.
  • Know what you are feeling – Think about where you are feeling stress in your body. Either lie on your back or sit with your feet on the floor. Start at your toes and work your way up to the top of your head.  Think about how your body feels and the areas that feel tight; mentally loosen each part until you are completely relaxed.
  • Connect with others – Reach out to others who understand what you are going through.  Join the TSC Alliance/Inspire Online Support Community or the TSC Alliance Facebook page (links below). Talking to someone who understands is a great way to relieve anxiety.

Resources

Financial Issues For Your Adults with TSC: Thinking About Independent Living?

Want vs. Need

If you are thinking about moving out and living independently there are many things you need to consider before taking that step.  The very first thing will be your financial situation and managing your money.  When thinking about your finances you need to follow the want vs. need rule.  Understanding the difference between a want and a need is crucial to maintaining a successful budget.  A “need” is something that is absolutely necessary to survive. Example: Food, shelter, clothing.  A “want” is something that makes your life easier. Example: Cable TV, dining out, going to the movies.

TSC Specific Needs

As a young adult with TSC, medical expenses are a need.  You need to make sure you have insurance coverage and can afford your medications. Consider this: If you are on your parent’s health care plan and you are approaching age 26, you will soon be responsible for finding your own medical insurance.

Finding Your Own Health Insurance

Visit this page to learn about how to choose a health insurance plan. Find out what your insurance coverage will cost you, and estimate how much you think you’ll need to pay in “out-of-pocket” costs (costs not covered by insurance). Once you have the cost of your healthcare needs, you can start looking at other areas of need.

Expenses

Housing: Use the internet to find the average cost of housing for your area. (A good resource to do this is www.numbeo.com.) Don’t forget the want vs. need rule.

Utilities:  Different rental properties require you to pay different utilities. Find out what utilities you will be responsible for paying. Utilities are a need; always ask what the average cost per month is before considering moving into a new place.

Food:  Food is a need in your budget, but which food you purchase will need to be thought of as want vs. need. (You want potato chips, but you need milk and vegetables.) It is also cheaper to cook than to eat out.

Transportation:  Transportation is a need, especially if you are working.  Car pooling and using public transportation will save significantly on transportation costs. If you have a car, your budget will need to include gas, maintenance and insurance expenses.

Personal Care/Clothing: Personal care items such as shampoo, deodorant, vitamins and haircuts are all needs. Clothing is a need as well, but deciding which clothing you purchase should be thought of as want vs. need. (You don’t need a fifth pair of jeans, but you do need an appropriate work outfit.)

Loan Repayment: As a young adult there is a possibility that you already have loans to repay for school, your vehicle, or credit card debt. If that is the case, these payments need to be included in your budget. Adjust the percentages below to meet at leastthe minimum monthly payments.

Budgeting

A good rule of thumb when looking at a budget for living independently is to break your income into percentages:  Housing 25%, Utilities 5%, Health Care 20%, Groceries 20%, Personal Care 5%, Transportation 10%, Loan Repayment 10%, and Entertainment 5%.

Example Budget

Net income: $2,000 (Net income is the amount you earn after taxes have been taken out.)

Housing/Rent $500 (25% of $2,000)
Utilities $100 (5% of $2,000)
Healthcare $400 (20% of $2,000)
Groceries/Food $400 (20% of $2,000)
Personal Care $50 (5% of $2,000)
Transportation $200 (10% of $2,000)
Loan Repayment $200 (10% of $2,000)
Entertainment (if able) $50 (5% of $2,000
Total Budget $2,000

Living independently means knowing what you can afford, but remember: when living with TSC you CANNOT skimp on your health care needs.

Other Resources

Budgeting Tools

Click here to use a calculator that compares your income versus expenses. Try to follow the percentage rules, but adjust accordingly for your lifestyle. (For example: If you don’t have any debt to repay, but your transportation costs are more than 10%, you can adjust your percentages.)

Click here for a sample budget sheet to use as a starting point.

Where is Your Money Going?

A wonderful online resource for tracking your spending is www.mint.com. You can link all of your banking accounts to your Mint account and label each transaction as groceries, gift, toiletries, etc. Doing this for 2-3 months will help you see where you spend most of your money and where you may need to cut back.

Recommendations on Budgeting

For more ideas on how to use a percentage budget check out this article from Money.com or this one from Forbes.com.

Extra Tips

For extra tips on budgeting as a young adult visit:

Healthy Grocery Shopping Skills

It’s important for everyone to eat healthy, but it’s even more important for young adults with TSC.  The first step to healthy eating is shopping for groceries.  Here are a few important tips for grocery shopping that can help you stay healthy and save money at the same time.

Make a List

One effective way to develop a grocery list is to sit down and write out the number of meals you will be eating throughout the week, including breakfast, lunch, dinner, and snacks for each day.  Then write out a menu for each meal you will be eating.  For example:

Monday

  • Breakfast (cereal, strawberries, coffee)
  • Lunch (peanut butter sandwich, carrots, apple)
  • Snacks (fruit, cheese, celery sticks)
  • Dinner (tilapia, broccoli, baked potato)

Write out a menu for each day of the week then create a shopping list from your menus.  It is easier and more cost effective to write your shopping list based on meals that you have planned out; it will save you money and make you less likely to waste food.  To be even more cost-effective, go to your grocery store website and see which foods are on sale and develop your menus from their sale items (for example, weeklyad.walmart.com).  These sites also provide coupons that you can print and clip to save money.

Have a Plan

Write your shopping list so that it matches the layout of the store.  For example, if the produce section is in the front of the store, put produce items at the top of your list, and so on.  Stores are set up with eye catching displays to tempt you in buying items that you don’t need. Only go down aisles that carry essentials like canned goods, beans, rice, and vegetables, and frozen foods, such as fruits, vegetables, and seafood.  Stay away from the snack, cookie, and soda aisles.   Items in these aisles are expensive and not good nutrition choices.

Other Helpful Hints

  • Never go to the store hungry.
  • Store brands are usually just as good as name brands.
  • The middle of the week stores reduce prices and have sales on expiring items.
  • Look on top and bottom selves for your best values.

Additional Resources

reilly2014

“TSC is unavoidable…

…but arming yourself with knowledge to fight back isn’t. Use the information here and join the campaign against TSC today.” — Reilly Sheffield

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