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Living with Tuberous Sclerosis

Scott Loeb DO
Medically reviewed by Dr. Loeb
Scott Loeb DO
Medically reviewed by Dr. Loeb

Tuberous Sclerosis (TS) is a rare genetic disorder affecting various body organs. It causes noncancerous tumors called hamartomas to grow in different organs. It leads to various symptoms and complications. People with TS face unique challenges that impact their daily lives.

Living with TS involves navigating a complex medical landscape. It requires early diagnosis, exploring healing, and managing physical and neurological symptoms. Multidisciplinary care and support are often necessary.

TS can also bring neurodevelopmental challenges like cognitive and behavioral issues. These challenges affect education, social interactions, and quality of life.

Fortunately, advancements in medical research and therapies have expanded healing options. This helps manage the condition and enhance well-being. In this article, we will guide you on living with Tuberous Sclerosis. So, stay with us and get valuable information.

 

Tuberous Sclerosis Prognosis

TS is a rare genetic disorder affecting many body organs. The prognosis, or expected outcome, for people with this condition can vary. It depends on factors like:

  • The severity of the condition.
  • Which organs are affected.
  • How the symptoms present in each individual.

Some people with Tuberous Sclerosis have mild symptoms and a more favorable prognosis. Others may face more challenges and complications, making their outlook less sure.

But there is hope for individuals with illness. Early diagnosis, comprehensive medical care, and appropriate interventions can help:

  • Manage symptoms.
  • Reduce complications.
  • Improve the quality of life.

It’s important to continue researching TS and providing comprehensive care. By better understanding the factors that influence prognosis and offering practical support, we can help individuals with Tuberous Sclerosis live their best lives.

Varied Symptoms

The symptoms of TS can vary widely among affected individuals. Some may have mild symptoms. They do not significantly impact their daily lives. At the same time, others may experience more severe manifestations that affect many organs and systems.

Neurological Involvement

The neurological manifestations of Tuberous Sclerosis significantly impact an individual’s prognosis. The severity and frequency of seizures can vary greatly. And they may need ongoing management and curing.

Renal Involvement

Tumors in the kidneys (renal angiomyolipomas) are common in TS. These tumors’ size, location, and growth rate can influence the prognosis. Regular monitoring and appropriate interventions are necessary. It’s to prevent complications such as bleeding or kidney failure.

Pulmonary Complications

Lung involvement in TS can lead to respiratory problems. The severity of these complications can vary. And they may need medical intervention and monitoring. In other ways, living with Tuberous Sclerosis can significantly reduce its quality.

Cardiac Involvement

Cardiac rhabdomyoma, benign tumors in the heart, are often present in infants with TS. Often, these tumors regress or cause no significant issues. So, the illness doesn’t affect living with Tuberous Sclerosis. However, some individuals may experience cardiac complications that need monitoring and healing. 

Skin Manifestations

Skin abnormalities are common in TS. They are facial angiofibroma, shagreen patches, and hypomelanotic macules. These lesions are typically benign. However, they can cause cosmetic concerns and may need dermatological interventions.

Intellectual and Developmental Disabilities

TS can be associated with various degrees of intellectual and developmental disabilities. The severity of these impairments can affect an individual’s prognosis. And their ability to function independently can change.

Treatment and Management

The prognosis for individuals with Tuberous Sclerosis has improved with advances in medical healing. Early detection, appropriate medical interventions, and regular monitoring can help. They mitigate the impact of the condition on various organ systems.

Individual Variability

It is essential to remember that each person’s experience with TS is unique. The manifestations and prognosis can differ significantly in families affected by TS. The following factors are crucial for optimizing outcomes: 

  • Ongoing medical care.
  • Multidisciplinary support.
  • Individualized curing plans.

Quality of Life

TS presents challenges and affects living with Tuberous Sclerosis. However, many individuals with the condition lead fulfilling and productive lives. Supportive environments, access to educational resources, and appropriate interventions can significantly enhance the quality of life for individuals with TS.

Elderly man sitting in a hospital room

 

Tuberous Sclerosis Complications

TS is a genetic disorder affecting various organs, giving rise to multiple complications. Understanding these tuberous sclerosis complications is crucial. It is pivotal for comprehensive medical care and family support. Here, we delve into the diverse challenges associated with this condition:

1. Neurological Challenges:

  • TS often manifests in benign tumors in the brain. It is leading to seizures, intellectual disabilities, and behavioral difficulties.

2. Renal Involvement:

  • Tumors may form in the kidneys. They potentially cause hypertension, kidney dysfunction, and an increased risk of renal complications.

3. Dermatological Manifestations:

  • Skin abnormalities include facial growths or patches. They can significantly impact the individual’s appearance and emotional well-being.

4. Cardiac Afflictions:

  • Cardiac rhabdomyomas, benign tumors affecting the heart, may necessitate specialized cardiac care.

5. Ophthalmic Issues:

  • Benign tumors in the eyes can lead to vision impairment, strabismus, or retinal hamartomas. They require regular ophthalmic assessments.

6. Pulmonary Complications:

  • Rarely, lung tumors may develop. They pose respiratory challenges and require specialized respiratory care.

7. Behavioral and Psychiatric Concerns:

  • Intellectual disabilities, autism spectrum disorders, and behavioral problems are severe. They need comprehensive behavioral and mental health support.

8. Educational Implications:

  • Children with TS may face learning difficulties, necessitating tailored educational interventions and support.

9. Genetic Counseling Needs:

  • Families may benefit from genetic counseling to comprehend the hereditary aspects of TS. Also, they may make informed family planning decisions.

 10. Psychosocial Well-being:

  • Addressing emotional and psychosocial needs is paramount. They support individuals with TS and their families through counseling and resources.

These tuberous sclerosis complications are pivotal for healthcare providers and families alike. They foster a holistic approach to managing the challenges associated with this genetic disorder.

 

Daily Life with Tuberous Sclerosis

Factors impacting daily life for people with Tuberous Sclerosis include:

  • Medication management. Taking medications regularly and handling potential side effects is essential. It’s vital for managing seizures, behavioral issues, and other symptoms.
  • Seizure management. Precautions like creating a safe environment and using protective measures are necessary. They help to prevent injuries during seizures.
  • Medical appointments. Regular visits to specialists are needed to check and manage the condition. It helps to schedule and plan.
  • Educational considerations. TS can affect cognitive development and learning abilities. It often needs personalized educational plans, extra support, or specialized settings.
  • Behavioral and emotional support. Neurological impacts can lead to behavioral issues and emotional challenges. Those who live with Tuberous Sclerosis need to access mental health resources. They are counseling and support groups. 
  • Physical limitations. Tumors and associated symptoms can impose physical constraints. It necessitates assistive devices, physical therapy, or occupational therapy.
  • Social interactions. Skin manifestations, intellectual disabilities, and behavioral challenges can influence social interactions. Supportive environments, understanding peers, and community involvement contribute to social well-being.
  • Safety precautions. Taking safety measures like securing the home and informing people of the condition is essential. It’s due to the potential for seizures and other symptoms.
  • Emotional support for families. The condition affects the entire family. Emotional support, respite care, and caregiver resources are crucial. It’s essential for the well-being of the whole family unit.
  • Future planning. Long-term planning is essential. It includes financial considerations, building a support network, and exploring vocational and independent living opportunities.

Person holding pills and a glass of water.

 

Family Supportive Care in Tuberous Sclerosis

Family supportive care for people living with Tuberous Sclerosis includes:

  • Education and information. Families need accurate and up-to-date information about the condition.
  • Multidisciplinary approach. Coordinating care among different specialists ensures comprehensive support.
  • Emotional support. Providing counseling and connecting families with support groups helps them cope with challenges.
  • Caregiver support. Assisting caregivers with daily care needs, training, and practical guidance promotes their well-being.
  • Advocacy and resources. It helps families navigate healthcare systems, access support services, and find financial help. It empowers them to advocate for their loved ones living with Tuberous Sclerosis.
  • Transition planning. Doctors guide families through the transition to adult healthcare, vocational training, independent living, and financial planning. It facilitates a smoother process.
  • Genetic counseling. People understand the genetic aspects of illness. And it aids in family planning decisions.
  • Community engagement. Connecting families with support networks and organizations fosters a sense of community.
  • Long-term planning. It guides families in financial considerations, legal matters, and guardianship arrangements. It helps them plan for the future.

 

Bottom Line

Living with Tuberous Sclerosis brings unique challenges for individuals and families. The prognosis varies based on severity. But medical advancements and supportive care enable fulfilling lives. 

Comprehensive management, medication adherence, and multidisciplinary support services are essential. Family support provides education, emotional aid, and advocacy. Addressing physical, neurological, and emotional aspects enhances the quality of life. Research, community support, and awareness are vital for a supportive environment. This way, it is possible to make living with Tuberous Sclerosis better.

 

FAQ:

  • What is Tuberous Sclerosis?

TS is a genetic disorder characterized by the growth of noncancerous tumors in various organs. It often impacts the brain, skin, kidneys, heart, and eyes.

  • How is Tuberous Sclerosis Diagnosed?

Tuberous sclerosis is always diagnosed through clinical evaluation, imaging studies, and genetic testing. Healthcare professionals assess the presence of specific symptoms and conduct thorough examinations.

  • Can Tuberous Sclerosis be Cured?

There is no cure for tuberous sclerosis. However, management strategies focus on alleviating symptoms. They provide supportive care and address complications through a multidisciplinary approach.

  • What is the average age for tuberous sclerosis?

Tuberous sclerosis is a genetic disorder. It causes benign tumors to develop in various organs and can manifest at any age. But symptoms often appear in early childhood. The average age of diagnosis for tuberous sclerosis is around 1 to 2 years old.

  • How rare is tuberous sclerosis?

Tuberous sclerosis is considered a rare genetic disorder. It occurs in approximately 1 in 6,000 to 1 in 10,000 individuals worldwide. The prevalence may vary among different populations. But tuberous sclerosis is relatively uncommon.

  • What are the common signs and symptoms of tuberous sclerosis?

Tuberous sclerosis can affect many organs, leading to many symptoms. Common signs are seizures, developmental delays, and intellectual disabilities. The signs are also skin abnormalities, kidney problems, cardiac issues, and lung involvement. But the severity and specific manifestations can vary widely among individuals.

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Edward Medina
Edward Medina
15:34 30 Jun 22
Just such an amazing staff that makes you feel like part of their family. I’ve been going there for over 5 years now... and each visit I get the very best care and treatments that I have ever received in the 20+ years that I’ve been dealing with severe debilitating migraines. Since i started seeing them the number of my migraines has dropped from 15-20 a month to 2-3 every 3 month. I highly recommend them …they will change your life!read more
Daneisha Johnson
Daneisha Johnson
22:20 19 May 22
Dr. Askari was very kind and explained everything so I could understand. The other staff were nice as well. I would... have gave 5 stars but I was a little taken aback when I checked in and had to pay 600.00 upfront. I think that should have been discussed in a appointment confirmation call or email just so I could have been prepared.read more
Jean Cooper
Jean Cooper
16:54 29 Apr 22
I love the office staff they are friendly and very helpful. Dr. JODIE is very caring and understanding to your needs... and wants to help you. I will go back. would recommend Dr. Dr. Jodie to other Patients in a heart beat. The team works well together.read more
Linda M
Linda M
19:40 02 Apr 22
I was obviously stressed, needing to see a neurologist. The staff was so patient and Dr. Ansari was so kind. At one... point he told me to relax, we have time, when I was relaying my history of my condition. That helped ease my stress. I have seen 3 other neurologists and he was the only one who performed any assessment tests on my cognitive and physical skills. At one point I couldn't complete two assessments and got upset and cried. I was told, it's OK. That's why you're here. I was truly impressed, and super pleased with the whole experience!read more
Leslie Durham
Leslie Durham
15:05 01 Apr 22
I've been coming here for about 5 years. The staff are ALWAYS friendly and knowledgeable. The Doctors are the absolute... best!! Jodie Moore is always in such a great mood which is a plus when you are already stressed. Highly recommendedread more
Monica Del Bosque
Monica Del Bosque
14:13 25 Mar 22
Since my first post my thoughts have changed here. It's unfortunate. My doctor and PA were great, but the office staff... is horrible. They never call you back when they say they will, they misinform you, they cause you too much stress wondering what's going on, they don't keep you posted. They never answer the phone. At this point I've left four messages in the last week, and I have sent three messages. Twice from their portal and one direct email. No response. My appointment is on Monday morning at 8:30am, no confirmation on my insurance and what's going on. What the heck is going on, this is ridiculous!I've given up... the stress her office staff has put me through is just not worth it. You can do so much better, please clean house, either change out your office staff, or find a way for them to be more efficient please. You have to do something. This is not how you want to run your practice. It leaves a very bad impression on your business.read more
Ron Buckholz
Ron Buckholz
23:32 23 Mar 22
I was actually pleasantly surprised with this visit! It took me a long time to get the appointment scheduled because no... one answers your phones EVER! After a month, I finally got in, and your staff was warm, friendly, and I was totally impressed! I feel like you will take care of my needs!read more
Steve Nabavi
Steve Nabavi
16:28 16 Mar 22
It was a nice visit. Happy staff doing all they can do to comfort the patients in a very calming environment. You ask... me they are earned a big gold star on the fridge. My only complaint they didn't give me any cookies.read more
Katie Lewis
Katie Lewis
16:10 10 Feb 22
Had very positive appointments with Jodie and Dr. Sheth for my migraine care. Jodie was so fast with the injections and... has so much valuable info. I started to feel light headed during checkout and the staff was SO helpful—giving me a chair, water, and taking me into a private room until I felt better. Highly recommend this practice for migraine patients, they know what they’re doing!!read more
Joshua Martinez
Joshua Martinez
16:02 10 Dec 21
I was scheduled to be checked and just want to say that the staff was fantastic. They were kind and helpful. I was... asked many questions related to what was going on and not once did I feel as though I was being brushed off. The front desk staff was especially great in assisting me. I'm scheduled to go back for a mri and am glad that I'll be going there.read more
Isabel Ivy
Isabel Ivy
21:42 03 Nov 21
I had such a good experience with Lone Star Neurology, Brent my MRI Tech was so awesome and made sure I was very... comfortable during the appointment. He gave me ear plugs, a pillow, leg support and blanket, easiest MRI ever lol 🤣 My 72 hour EEG nurse Amanda was also so awesome. She made sure I was take care of over the 3 days and took her time with the electrodes to make sure it was comfortable for me! Paige was also a huge help in answering all my questions when it came to my test results, and letting me know her honest opinions about how I should go forth with my treatment.read more
Leslie Luce
Leslie Luce
17:37 20 Oct 21
The professionalism and want to help attitude of this office was present from the moment I contacted them. The follow... up and follow through as well as their willingness to find a way to schedule my dad was above and beyond. We visited two offices in the same day with the same experience. I am appreciative of this—we spend a lot of time with doctors and this was top notch start to finish.read more
robert Parker
robert Parker
16:38 16 Apr 21
I love going to this office. The staff is friendly and helpful. The doctor is great. I am getting the best... neurological tests and treatment I have ever had. The only reason I did not give them a 5 star rating is because it is impossible to reach a live person at the office to reschedule appointments. Every time I have tried to get through to the office it says all people are busy and I am sent to a voicemail. If they could get their phone answering fixed, I would give them a strong 5 stars.read more
MaryAnn Hornbaker
MaryAnn Hornbaker
00:26 25 Feb 21
Dr. Harney is an excellent Dr. I found him friendly , personable and thorough. I evidently am an unusual case. ... Therefore he spent a Hugh amount of time educating me. He even gave me literature to further explain my condition and how to follow up. This is something you rarely get from your doctors. So I am more than please with my doctor and his staff.read more
Roger Arguello
Roger Arguello
03:05 29 Jan 21
Always courteous, professional. The staff is very friendly and always work with you to find the best appointment time.... The care team has been great. Always taking the time to listen to your concerns and to find the best treatment.read more
Margaret Rowland
Margaret Rowland
01:12 27 Jan 21
I have been a patient at Lone Star Neurology for several years. Now both my adult daughters also are patients there. I... love Jodie. She is always so prompt whether it is a teleamed call are a visit in the office. She takes the time to explain everything to me and answers all my questions. I am so blessed to have Jodie as my doctor.read more
Susan Miller
Susan Miller
03:01 13 Jan 21
My husband had an accident 5 years ago and Lone Star Neurology has been such a blessing to us with my husbands care.... Jodie Moore is his provider and she is amazing! Jodie is very knowledgeable, caring, and thorough. She takes her time with you, making sure your needs are met and she is happy to answer any questions you may have. Lone Star Neurology’s patients are very lucky to have Jodie providing their care. Thank you Lone Star Neurology and especially Jodie for everything you have done for us. Jodie, you are the best!read more
Windalyn C
Windalyn C
01:32 09 Jan 21
Jodie is wonderful. She is very caring and knowledgeable. I have been to over a dozen neurologists, and none were able... to help me as much as they have here. Thanks!read more
Katie Kordel
Katie Kordel
00:40 09 Jan 21
Jodi Moore, nurse practitioner, is amazing. I have suffered from frequent, debilitating headaches for almost 20 years.... She has provided the best proactive and responsive care I have ever received. My quality of life has been greatly improved by her caring approach and tenacity in finding solutions.read more
Ellie Natsis
Ellie Natsis
15:41 07 Jan 21
I have had the best experience at this neurologist's office! For over a year I have been receiving iv treatments here... each month and my nurse, Bobbie is beyond wonderful!! She's so attentive, knowledgeable, caring, and detail oriented. She makes an otherwise uncomfortable experience much more pleasant and definitely puts me at ease! She also helps me with my insurance,ordering this specialty medication and dealing with the ordering process which is no easy feat.Needless to say, she goes above a beyond in every way and I'm so grateful to this office and to Bobbie for all they do for me!read more
Matt Morris
Matt Morris
15:39 07 Jan 21
Let me start by saying that I have been coming here for years. Due to my autoimmune disease, I am in this office... once every three weeks for multiple hours at a time. The office is very clean and the staff very friendly. My only complaint would be there communication via phone. They aren't the best at responding if you leave a voicemail and expect a call back. I understand that this is prob just due to the sheer number of alls they receive daily. What I can say I like the best about the office are the people. Bobby who handles my infusions is great. I never have any issues with her setting up my infusions. She is very quick to reply to messages sent via text and if she were to leave then my whole opinion of the office may change. I also enjoy people like Matt, Lauren, and Jodi. I appreciate all that they do for me and without this team I'm not sure I would be as happy as I am to visit the office as frequently as I have to. Please ensure that these folks are recognized as they are what makes my visit to this office so tolerable :).read more
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