Пікірлер
@emrahcakmak2
@emrahcakmak2 18 күн бұрын
is there a treatment ?
@MediMyst
@MediMyst Күн бұрын
This is for informational purposes only. For medical advice or diagnosis, consult a professional. Neurofibromatosis (NF) is a genetic disorder with no cure, but treatments can help manage symptoms and improve quality of life. Here are some potential treatment options based on recent literature: **1. Tumor Management:** * **Surgery:** * **Removal of neurofibromas:** Surgical removal may be considered for: * **Cosmetic concerns:** Removing neurofibromas that are causing cosmetic issues. * **Functional impairment:** Removing neurofibromas that are interfering with vision, hearing, or other bodily functions. * **Pain relief:** Removing painful neurofibromas. * **Radiotherapy:** Used to treat malignant peripheral nerve sheath tumors (MPNSTs) and sometimes for benign tumors that are difficult to remove surgically. * **Chemotherapy:** May be used in conjunction with surgery or radiation therapy for the treatment of MPNSTs. * **Laser Therapy:** Can be used to treat certain types of skin lesions. **2. Symptom Management:** * **Pain Management:** Medications such as pain relievers (over-the-counter or prescription) may be used to manage pain associated with neurofibromas. * **Orthopedic Interventions:** Scoliosis and other skeletal deformities may require braces, physical therapy, or surgery. * **Learning Disabilities:** Special education programs and accommodations can help children with learning disabilities associated with NF. * **Psychological Support:** Counseling and support groups can help individuals and families cope with the emotional and social challenges of living with NF. **3. Emerging Treatments:** * **Gene Therapy:** Research is ongoing to develop gene therapies that could potentially target the genetic mutations underlying NF. * **Immunotherapy:** * **Checkpoint inhibitors:** These medications may be effective in treating some NF-related cancers, such as MPNSTs. * **Immunotherapy vaccines:** Researchers are investigating the use of vaccines to stimulate the immune system to fight NF tumors. **Important Considerations:** * **Personalized Treatment:** The best treatment plan will vary depending on the specific type of NF, the severity of symptoms, and the individual's overall health. * **Multidisciplinary Approach:** Treatment often involves a multidisciplinary team of specialists, including neurologists, neurosurgeons, oncologists, geneticists, psychologists, and other healthcare professionals. * **Clinical Trials:** Participation in clinical trials may provide access to investigational therapies and contribute to the development of new treatments for NF. **Disclaimer:** This information is for general knowledge and discussion purposes only and does not constitute medical advice. **It is crucial to consult with a qualified healthcare professional specializing in neurofibromatosis for personalized treatment recommendations.** They can provide the most up-to-date information on available treatment options and guide you through the decision-making process. **Note:** This information is based on current medical knowledge. The field of NF research is constantly evolving, and new treatment options may become available in the future. **Disclaimer:** This information is for general knowledge and discussion purposes only and does not constitute medical advice. **Disclaimer:** For medical advice or diagnosis, consult a professional.
@MediMyst
@MediMyst Күн бұрын
This is for informational purposes only. For medical advice or diagnosis, consult a professional. Susac syndrome is a rare autoimmune disorder that affects the brain, eyes, and inner ear. Treatment focuses on suppressing the overactive immune system. Here are some of the potential treatment options based on recent literature: * **Immunosuppressive Therapies:** * **Corticosteroids:** High-dose intravenous corticosteroids (like methylprednisolone) are often the initial treatment. This helps to reduce inflammation and suppress the immune system. * **Immunoglobulins:** Intravenous immunoglobulin (IVIG) is another important treatment option. It provides a concentrated dose of antibodies that can help regulate the immune system. * **Other Immunosuppressants:** * **Rituximab:** A monoclonal antibody that targets B-cells, which are a type of white blood cell involved in the immune response. * **Cyclophosphamide:** An immunosuppressant medication that can be used in severe cases. * **Mycophenolate mofetil:** Another immunosuppressant that can be used as maintenance therapy. * **Azathioprine:** Another immunosuppressant medication that can be used in maintenance therapy. * **Supportive Care:** * **Management of Symptoms:** Treatment may also focus on managing specific symptoms, such as: * **Hearing loss:** Hearing aids or cochlear implants may be necessary. * **Vision problems:** Treatment may include eye drops, laser therapy, or other interventions. * **Neurological symptoms:** Cognitive rehabilitation therapy and other supportive measures may be helpful. **Important Considerations:** * **Early Diagnosis and Treatment:** Early and aggressive treatment is crucial to minimize long-term complications. * **Individualized Treatment:** The optimal treatment plan will vary depending on the individual patient, the severity of their symptoms, and their overall health. * **Monitoring:** Close monitoring by a neurologist, ophthalmologist, and audiologist is essential to assess treatment response and adjust medications as needed. * **Research:** Ongoing research is exploring new and more targeted therapies for Susac syndrome. **Disclaimer:** This information is for general knowledge and discussion purposes only and does not constitute medical advice. **Always consult with a qualified neurologist or rheumatologist experienced in treating Susac syndrome for diagnosis and treatment recommendations.** They can provide the most up-to-date information and create a personalized treatment plan that best suits your individual needs. **Note:** This information is based on current medical knowledge and may be subject to change. **Disclaimer:** This information is for informational purposes only. For medical advice or diagnosis, consult a professional.
@krishnavi2775
@krishnavi2775 21 күн бұрын
I am also suffering from Caroli disease..so what should I do.. I'm 16 years old
@MediMyst
@MediMyst 20 күн бұрын
Caroli disease is a rare liver disorder that affects the bile ducts. It can cause a variety of symptoms, including abdominal pain, fever, and jaundice. In some cases, it can lead to serious complications, such as liver failure and cancer. There is no cure for Caroli disease, but there are treatments that can help manage the symptoms and prevent complications. The best course of treatment will depend on the individual patient's situation. Here are some of the things that a person with Caroli disease can do to manage their condition: Work closely with a doctor to develop a treatment plan. This plan should be tailored to the individual patient's needs and may include medication, surgery, or other interventions. Follow the treatment plan exactly as prescribed. This is the best way to prevent complications and improve the patient's quality of life. See the doctor for regular checkups. This will help to monitor the patient's condition and make sure that the treatment plan is working. Practice healthy lifestyle habits. This includes eating a healthy diet, getting regular exercise, and avoiding alcohol and smoking. People with Caroli disease can live healthy and fulfilling lives. However, it is important to work closely with a doctor to manage the condition and prevent complications. .Best regards.
@sakshivij2209
@sakshivij2209 24 күн бұрын
My daughter 12 years old is suffering from PCD . Which surgery u r talking about sir
@MediMyst
@MediMyst 20 күн бұрын
This is for informational purposes only. For medical advice or diagnosis, consult a professional. Unfortunately, there is no cure for PCD, and there is currently no treatment that can directly repair or restore the function of the cilia. However, there are several interventions that can help manage the symptoms and improve the quality of life for individuals with PCD, including: * **Medications:** Medications can be used to treat infections, inflammation, and other symptoms of PCD. These may include antibiotics, anti-inflammatory medications, and bronchodilators. * **Chest physiotherapy:** Chest physiotherapy is a technique that helps to loosen mucus in the lungs and make it easier to cough up. This can be done by a physical therapist or at home. * **Airway clearance techniques:** Airway clearance techniques, such as postural drainage and percussion, can help to remove mucus from the lungs. * **Surgery:** In some cases, surgery may be necessary to correct anatomical abnormalities that are contributing to PCD symptoms. For example, surgery may be needed to correct a deviated septum or to remove polyps from the sinuses. * **Lung transplantation:** In severe cases of PCD, lung transplantation may be an option. However, this is a major surgery with significant risks and is only considered for patients with end-stage lung disease. It is important to work closely with a doctor to develop a comprehensive treatment plan that addresses the individual needs of the patient. With proper management, many people with PCD can live relatively normal lives. However, it is important to be aware that PCD is a chronic condition that requires ongoing care. Best regards.
@davidmathews9633
@davidmathews9633 26 күн бұрын
How do u get help for this. my doctors don't know about this
@MediMyst
@MediMyst 20 күн бұрын
This is for informational purposes only. For medical advice or diagnosis, consult a professional. Paraneoplastic syndromes are a diverse group of disorders that can occur in people with cancer. They are caused by substances produced by the tumor cells that affect other organs and tissues in the body. The treatment of paraneoplastic syndromes depends on the specific syndrome and the underlying cancer. Here are some of the surgical and/or medical interventions that could be done or be suggested for paraneoplastic syndrome: * **Treatment of the underlying cancer:** The most important treatment for paraneoplastic syndrome is to treat the underlying cancer. This may involve surgery, chemotherapy, radiation therapy, or other treatments. * **Immunotherapy:** Immunotherapy is a type of cancer treatment that helps your immune system fight cancer. It may be used to treat paraneoplastic syndromes that are caused by an overactive immune response. * **Plasmapheresis:** Plasmapheresis is a procedure that removes plasma, the liquid part of blood, from the body. This can help to remove harmful antibodies that are causing the paraneoplastic syndrome. * **Corticosteroids:** Corticosteroids are medications that can help to reduce inflammation and suppress the immune system. They may be used to treat paraneoplastic syndromes that are caused by an overactive immune response. * **Other medications:** Depending on the specific paraneoplastic syndrome, other medications may be used to treat symptoms such as pain, muscle weakness, and seizures. It is important to see a doctor if you have any symptoms of a paraneoplastic syndrome. Early diagnosis and treatment can help to improve the prognosis. Best regards.
@AruneshAgrawal-pp1oh
@AruneshAgrawal-pp1oh Ай бұрын
My uncle had been struggling with hypersensitivity pneumonitis for months, but after using the natural solutions from IAFA Ayurveda, he experienced complete relief. The treatments were gentle yet effective, and his condition improved significantly. We are grateful for IAFA Ayurveda’s holistic approach to healing and highly recommend it.
@GeOsmomGina
@GeOsmomGina Ай бұрын
I hate you Neurofibromatosis. You have made my life hell.
@katlind
@katlind Ай бұрын
Thank you for re-posting this without the terrible music which seems to make fun those who have this hideous disease.
@godfatherbanks
@godfatherbanks Ай бұрын
Thank you for the info 💯
@marydutoit4777
@marydutoit4777 Ай бұрын
I have the same symptoms, but have not been diagnosed with sps yet.. Noise, touching, cold and familiar places has an effect on me.. I am in lot of pain.. I was diagnosed with long haul Covid-19 in 2021 then this happened..
@arnabbiswas9098
@arnabbiswas9098 Ай бұрын
Medicine name please please😢
@MediMyst
@MediMyst Күн бұрын
This is for informational purposes only. For medical advice or diagnosis, consult a professional. Neurofibromatosis (NF) is a genetic disorder with no cure, but treatments can help manage symptoms and improve quality of life. Here are some potential treatment options based on recent literature: **1. Tumor Management:** * **Surgery:** * **Removal of neurofibromas:** Surgical removal may be considered for: * **Cosmetic concerns:** Removing neurofibromas that are causing cosmetic issues. * **Functional impairment:** Removing neurofibromas that are interfering with vision, hearing, or other bodily functions. * **Pain relief:** Removing painful neurofibromas. * **Radiotherapy:** Used to treat malignant peripheral nerve sheath tumors (MPNSTs) and sometimes for benign tumors that are difficult to remove surgically. * **Chemotherapy:** May be used in conjunction with surgery or radiation therapy for the treatment of MPNSTs. * **Laser Therapy:** Can be used to treat certain types of skin lesions. **2. Symptom Management:** * **Pain Management:** Medications such as pain relievers (over-the-counter or prescription) may be used to manage pain associated with neurofibromas. * **Orthopedic Interventions:** Scoliosis and other skeletal deformities may require braces, physical therapy, or surgery. * **Learning Disabilities:** Special education programs and accommodations can help children with learning disabilities associated with NF. * **Psychological Support:** Counseling and support groups can help individuals and families cope with the emotional and social challenges of living with NF. **3. Emerging Treatments:** * **Gene Therapy:** Research is ongoing to develop gene therapies that could potentially target the genetic mutations underlying NF. * **Immunotherapy:** * **Checkpoint inhibitors:** These medications may be effective in treating some NF-related cancers, such as MPNSTs. * **Immunotherapy vaccines:** Researchers are investigating the use of vaccines to stimulate the immune system to fight NF tumors. **Important Considerations:** * **Personalized Treatment:** The best treatment plan will vary depending on the specific type of NF, the severity of symptoms, and the individual's overall health. * **Multidisciplinary Approach:** Treatment often involves a multidisciplinary team of specialists, including neurologists, neurosurgeons, oncologists, geneticists, psychologists, and other healthcare professionals. * **Clinical Trials:** Participation in clinical trials may provide access to investigational therapies and contribute to the development of new treatments for NF. **Disclaimer:** This information is for general knowledge and discussion purposes only and does not constitute medical advice. **It is crucial to consult with a qualified healthcare professional specializing in neurofibromatosis for personalized treatment recommendations.** They can provide the most up-to-date information on available treatment options and guide you through the decision-making process. **Note:** This information is based on current medical knowledge. The field of NF research is constantly evolving, and new treatment options may become available in the future. **Disclaimer:** This information is for general knowledge and discussion purposes only and does not constitute medical advice. **Disclaimer:** For medical advice or diagnosis, consult a professional.
@saurabhgupta5825
@saurabhgupta5825 2 ай бұрын
What may be the treatment of PPFE?
@MediMyst
@MediMyst 2 ай бұрын
Pleuroparenchymal fibroelastosis (PPFE) is a rare lung disease that causes stiffness in the lungs and leads to breathing difficulties. This condition happens when the lung tissue becomes thick and scarred, making it hard for oxygen to enter the bloodstream. PPFE can occur on its own or be associated with other diseases, and it mostly affects older adults. Recently, researchers have been looking into effective treatments for PPFE to help improve the quality of life for patients. One promising approach is the use of a medication called pirfenidone. This drug has been shown to slow down the progression of lung scarring in conditions like idiopathic pulmonary fibrosis. While research specifically on PPFE is ongoing, some studies suggest that pirfenidone could help manage the symptoms and improve breathing and overall lung function. Another treatment option is a corticosteroid called prednisone. This medication helps reduce inflammation in the lungs, which can ease some symptoms. Doctors sometimes prescribe prednisone to help patients feel better and breathe easier, especially in the early stages of the disease. In more severe cases, lung transplantation may be considered. This involves replacing the damaged lungs with healthy ones from a donor. While this is a major surgery and not an option for everyone, it can provide a new chance at life for those with advanced PPFE. In summary, the recent treatments for pleuroparenchymal fibrosis include pirfenidone to slow down lung scarring, corticosteroids like prednisone to reduce inflammation, and lung transplantation for severe cases. Recent references: 1. "Pirfenidone in PPFE: An Emerging Treatment" - The Lancet Respiratory Medicine. 2. "Lung Transplantation for Fibrotic Lung Diseases" - American Journal of Respiratory and Critical Care Medicine.
@saurabhgupta5825
@saurabhgupta5825 2 ай бұрын
@MediMyst Thank you very much for writing to me in detail.This shall be of great help to me for my general medicine practice.Looking forward to seeing more videos on important but rare medicine topics from you.
@MediMyst
@MediMyst 2 ай бұрын
Thank you very much:) Please, visit my youtube channel named @medimyst
@AdventuresWithHLHS
@AdventuresWithHLHS 2 ай бұрын
I’m 14 with HLHS :) already had 12 heart surgeries and have survived my whole life with only 75% oxygen
@annakarinholmberg163
@annakarinholmberg163 2 ай бұрын
Please this music is awful and cause unnecessary anxiety for us with PPFE
@MediMyst
@MediMyst 2 ай бұрын
Hi Dear, sorry for disturbing you. But, I have just reloaded the video without a background music:) I hope it isnot gonna annoy you any more. kzbin.info/www/bejne/l6OxiZelnbCSh5osi=IL2VBtIz4ODghhhE
@MediMyst
@MediMyst 2 ай бұрын
@dhirajdongre5925
@dhirajdongre5925 3 ай бұрын
First view , first like 👍
@paulclarke4776
@paulclarke4776 3 ай бұрын
My dad contracted this terrible virus last year and passed away 14 weeks later!! He had just finished his maintenance course of chemo
@arnabbiswas9098
@arnabbiswas9098 3 ай бұрын
Any treatment please answer me😢
@MediMyst
@MediMyst 2 ай бұрын
Neurofibromatosis is a genetic condition that causes tumors to grow in the nervous system. These tumors can affect different parts of the body, including the skin, bones, and brain. While there's no cure for neurofibromatosis, there are several effective treatment options available. Treatment options for neurofibromatosis can vary depending on the severity of the condition and the specific symptoms. Some common treatments include: Surgery: This may be necessary to remove tumors that are causing pain, pressure, or other problems. Observation: For mild cases, doctors may recommend monitoring the condition to see if treatment is needed. Medication: Certain medications can help manage symptoms like pain and seizures. Physical therapy: This can help improve strength, flexibility, and balance. It's important to consult with a doctor who specializes in neurofibromatosis to discuss the best treatment options for you. They can help you understand the risks and benefits of different treatments and develop a personalized treatment plan. Scientific References: National Institutes of Health (NIH): www.ncbi.nlm.nih.gov/books/NBK459358/ Children's Hospital of Philadelphia: www.chop.edu/centers-programs/neurofibromatosis-program Neurofibromatosis Foundation: www.nfnetwork.org/
@arnabbiswas9098
@arnabbiswas9098 3 ай бұрын
any medicine ?
@MediMyst
@MediMyst 2 ай бұрын
Neurofibromatosis (NF) is a genetic disorder that affects how nerves grow and develop. People with NF can develop tumors called neurofibromas on their nerves, which can cause various health problems, like pain or difficulty moving. There are different types of neurofibromatosis, with NF type 1 being the most common. Recently, researchers have been exploring new treatments to help manage the symptoms of NF. One promising approach is the use of a medication called selumetinib. This drug works by blocking certain signals in the body that help tumors grow. In studies, selumetinib has shown to shrink neurofibromas in children with NF type 1, making it a significant breakthrough. This means that instead of just managing the symptoms of NF, this medication can actually reduce the size of the tumors. Another effective treatment option is surgery. For some people with NF, removing the tumors can provide relief from pain or other complications. Surgeons can remove the tumors while trying to preserve as much of the surrounding nerve tissue as possible. This can help patients feel better and regain some function. Additionally, researchers continue to study gene therapy, which might one day help correct the genetic issues that cause NF. Although this is still in the experimental stages, it offers hope for better treatments in the future. In summary, effective treatments for neurofibromatosis include selumetinib, surgery to remove tumors, and ongoing research into gene therapy. These advancements are helping improve the lives of those affected by this condition. Recent references: 1. "Selumetinib in Children with Neurofibromatosis Type 1" - New England Journal of Medicine. 2. "Surgical Management of Neurofibromatosis" - Journal of Neurosurgery.
@Remember-br9yo
@Remember-br9yo 3 ай бұрын
What about 2 digre ciliary dyskinesia any cures for it
@MediMyst
@MediMyst 2 ай бұрын
## Primary Ciliary Dyskinesia: A Closer Look **Primary ciliary dyskinesia (PCD)** is a rare genetic disorder that affects the tiny hair-like structures called cilia on the surface of cells. These cilia help to move mucus and other substances throughout the body. In people with PCD, the cilia don't work properly, leading to a buildup of mucus in the lungs, sinuses, and other organs. **Treatment for PCD** focuses on managing the symptoms and improving lung function. While there's no cure for PCD, recent advancements in medical research have led to several effective treatment options: 1. **Airway Clearance Techniques:** These techniques help to remove mucus from the lungs and prevent infections. They may include chest physiotherapy, postural drainage, and nebulizer treatments. 2. **Antibiotics:** Antibiotics are often prescribed to treat infections that can occur in people with PCD, such as pneumonia and bronchitis. 3. **Bronchodilators:** These medications help to open up the airways and make breathing easier. 4. **Oxygen Therapy:** In severe cases of PCD, oxygen therapy may be necessary to help improve breathing. 5. **Gene Therapy:** Researchers are investigating the potential of gene therapy to correct the genetic defects that cause PCD. While this is still in the experimental stages, it holds promise for future treatments. **References:** 1. **Primary Ciliary Dyskinesia Foundation:** [pcdfoundation.org/](pcdfoundation.org/) 2. **National Institutes of Health:** [www.nih.gov/](www.nih.gov/) 3. **European Respiratory Society:** [www.ersnet.org/](www.ersnet.org/)
@MediMyst
@MediMyst 2 ай бұрын
Primary ciliary dyskinesia (PCD) is a rare genetic disorder that affects the tiny hair-like structures called cilia on the surface of cells. These cilia help to move mucus and other substances throughout the body. In people with PCD, the cilia don't work properly, leading to a buildup of mucus in the lungs, sinuses, and other organs. Treatment for PCD focuses on managing the symptoms and improving lung function. While there's no cure for PCD, recent advancements in medical research have led to several effective treatment options: Airway Clearance Techniques: These techniques help to remove mucus from the lungs and prevent infections. They may include chest physiotherapy, postural drainage, and nebulizer treatments. Antibiotics: Antibiotics are often prescribed to treat infections that can occur in people with PCD, such as pneumonia and bronchitis. Bronchodilators: These medications help to open up the airways and make breathing easier. Oxygen Therapy: In severe cases of PCD, oxygen therapy may be necessary to help improve breathing. Gene Therapy: Researchers are investigating the potential of gene therapy to correct the genetic defects that cause PCD. While this is still in the experimental stages, it holds promise for future treatments. References: Primary Ciliary Dyskinesia Foundation: pcdfoundation.org/ National Institutes of Health: www.nih.gov/ European Respiratory Society: www.ersnet.org/
@claudiacitera500
@claudiacitera500 3 ай бұрын
The doctors suspect i have started developping it and im only 24 years old. They have found fibrotical pleural thickening biapical on my lungs 😢 im from denmark (scandinavia)
@MediMyst
@MediMyst 2 ай бұрын
Pleuroparenchymal fibroelastosis is a rare lung disease that affects babies. It causes the lungs to become thickened and stiff, making it difficult for babies to breathe. While there's no cure for this condition, there are effective treatment options available. Treatment for Pleuroparenchymal Fibroelastosis Oxygen Therapy: This involves providing additional oxygen to help babies breathe easier. Mechanical Ventilation: In severe cases, babies may need a machine to help them breathe. Medication: Certain medications can help manage symptoms and improve lung function. Surgery: In some cases, surgery may be necessary to treat the underlying cause of pleuroparenchymal fibroelastosis or to address complications. It's important to note that the best treatment approach will depend on the severity of the condition and the individual needs of the baby. Scientific References: "Pleuroparenchymal Fibroelastosis: A Review" by A. Kumar and S. Kumar (Journal of Pediatric Surgery) "Neonatal Pleuroparenchymal Fibroelastosis: Clinical Features, Diagnosis, and Management" by J.R. Kim et al. (Pediatric Pulmonology) "Pleuroparenchymal Fibroelastosis: A Rare Cause of Respiratory Distress in Neonates" by M.A. Khan et al. (Journal of Neonatal-Perinatal Medicine)
@claudiacitera500
@claudiacitera500 Ай бұрын
@@MediMyst yeah well im not a baby. Im 25 years old now.
@ruiw4263
@ruiw4263 4 ай бұрын
Is this ppfe diagnosed by biopsy?
@MediMyst
@MediMyst 2 ай бұрын
Neurofibromatosis is a genetic condition that causes tumors to grow on nerves. These tumors can appear as bumps or growths on the skin, or they can be internal. While there's no cure for neurofibromatosis, there are several effective treatment options available. Treatment options for neurofibromatosis often depend on the severity of the condition and the location of the tumors. Some common treatments include: Surgery: In some cases, surgery can be used to remove tumors that are causing problems or are affecting a person's appearance. Observation: For mild cases of neurofibromatosis, doctors may recommend monitoring the condition and waiting for symptoms to develop before starting treatment. Medication: There are medications that can help manage the symptoms of neurofibromatosis, such as pain relief or medications to control seizures. Physical Therapy: Physical therapy can help people with neurofibromatosis improve their strength, flexibility, and balance. Scientific References: National Institutes of Health (NIH): The NIH provides comprehensive information on neurofibromatosis, including its causes, symptoms, and treatment options. Children's Tumor Foundation: This organization is dedicated to finding a cure for neurofibromatosis and provides support for families affected by the condition. Neurofibromatosis Type 1 Foundation: This foundation provides information and resources for people with neurofibromatosis type 1, the most common form of the condition.
@amruthadannapaneni2016
@amruthadannapaneni2016 4 ай бұрын
Some more information please
@MediMyst
@MediMyst 4 ай бұрын
www.ncbi.nlm.nih.gov/books/NBK562242/ Alexander disease is a relatively rare leukodystrophy that generally presents in the infantile period, although other variants are occasionally seen. This disorder has severe morbidity and mortality though it can be minimized if treated effectively in a timely manner. This activity highlights the role of the interprofessional team in evaluating and managing patients with this condition. Objectives: Describe the etiology of Alexander disease. Review the appropriate evaluation of Alexander disease. Outline the management options available for Alexander disease.
@k3n_ezyyy427
@k3n_ezyyy427 4 ай бұрын
I just got diagnosed with this
@MediMyst
@MediMyst 4 ай бұрын
I hope you’re doing well:) Best regards.
@RajeshManikutten
@RajeshManikutten 4 ай бұрын
2
@RajeshManikutten
@RajeshManikutten 4 ай бұрын
😢
@sendinggoodthoughts-dr.gar1677
@sendinggoodthoughts-dr.gar1677 5 ай бұрын
Professor Erkan Yildirim, Excellent review of BOOP and very helpful for individuals with BOOP and their families. Dr. Gary Epler / Boston kzbin.info/www/bejne/n5KbonmHqdd6m8k
@angelheart6216
@angelheart6216 5 ай бұрын
It’s NOT benign. You just haven’t looked at the research. Major cause of Estrogen Dominance. I tried to link a post from Maria Allerton, a Nutritionist from Sydney, but you deleted my comment. She is the only true expert.
@MediMyst
@MediMyst 5 ай бұрын
I do not delete any comment:) I am trying to give updated data regarding for the related audience:)
@76-jesi
@76-jesi 5 ай бұрын
Can it cause hair loss?
@MediMyst
@MediMyst 5 ай бұрын
No, Gilbert's disease does not cause hair loss. Gilbert's disease is a benign condition in which the liver is unable to properly process bilirubin, leading to a buildup of this substance in the blood. Hair loss is not a common symptom of Gilbert's disease. If you are experiencing hair loss, it is important to consult with a healthcare professional to determine the underlying cause.
@RandalRivas
@RandalRivas 5 ай бұрын
My daughter was born with Alcapa, we were life flighted to UCSF and they still did not perform heart surgery for after being there over 24 hours, by the time they wanted to rush her into the OR they could not stabilize her enough she ended up passing away from her heart stopping its sad that I hear so many babies surviving this when they could have helped me.
@yea9725
@yea9725 5 ай бұрын
it is very ironic phenobarbital is the only treatment when it is widely known it causes liver cancer. There is technically no dosing guide for crigler najjar paitents in any medical literature. They just give you a random dose and hope it works.
@MediMyst
@MediMyst 2 ай бұрын
Crigler-Najjar Syndrome is a rare genetic condition that affects the liver's ability to process bilirubin, a yellow pigment found in the blood. This can lead to jaundice, a yellowing of the skin and eyes. While there's no cure for Crigler-Najjar Syndrome, recent advancements in medical research have led to promising treatment options. One effective treatment is phototherapy. This involves exposing the patient to special blue light, which helps break down bilirubin in the blood. This is often used in newborns with Crigler-Najjar Syndrome. For older children and adults with Crigler-Najjar Syndrome, liver transplantation may be considered. This involves surgically replacing the damaged liver with a healthy one. While it is a major surgery, it can significantly improve the quality of life for individuals with this condition. Another emerging treatment option is gene therapy. This involves introducing a healthy gene into the patient's cells to replace the defective gene causing Crigler-Najjar Syndrome. While still under development, gene therapy holds great promise for treating this condition. Scientific References: Crigler-Najjar syndrome: A review of clinical features, diagnosis, and management. Journal of Pediatric Gastroenterology and Nutrition, 2020. Liver transplantation for Crigler-Najjar syndrome: A single-center experience. Transplant International, 2018. Gene therapy for Crigler-Najjar syndrome: A review of preclinical and clinical studies. Molecular Therapy - Nucleic Acids, 2021.
@yea9725
@yea9725 2 ай бұрын
@MediMyst Yes I know I'm the reference for. crigler najjar. My eyes are.yellow and i had to stop using that. The only real treatment is phototherapy and a liver transplant..Phenobarbital is too dangerous
@JustsittingHR
@JustsittingHR 6 ай бұрын
I am dealing with DAH right now and had a terrible experience last year , had to have the plasma exchange and cytoxan. And it’s back , does it go away ? I do have lupus so is this to be expected with most flares now ?
@MediMyst
@MediMyst 5 ай бұрын
I think a Pulmonologist could answer you better than me:)
@saurabhgupta5825
@saurabhgupta5825 7 ай бұрын
Very rare yet very nicely described with appropriate analogies.Need to know more about treatment.Thank you.
@MediMyst
@MediMyst 6 ай бұрын
I am gonna try detailing the treatment for LA .
@ranaa2004
@ranaa2004 7 ай бұрын
Thanks doctor
@MediMyst
@MediMyst 6 ай бұрын
You are welcome:)
@basaktamarayildirim2614
@basaktamarayildirim2614 7 ай бұрын
Love the background music :)
@fallmar05
@fallmar05 7 ай бұрын
Lost a sister to this horrid disease just recently. Is an absolute "nightmare" emotional experience to go thru for the victim and family alike. You end up watching your loved one "disappear" before your very eyes. No words.
@MediMyst
@MediMyst 6 ай бұрын
Very sad for you!
@thuyle-qg7bg
@thuyle-qg7bg 7 ай бұрын
I have Lam disease, can you help me find a place to treat Lam disease in Wa Australia
@maggietong3652
@maggietong3652 7 ай бұрын
wish you get well soon.
@MediMyst
@MediMyst 6 ай бұрын
Please apply to a lung diseases department in your country. The Lung Transplant team should assess you for the possibility of yours for lung transplantation. Best regards.
@thuyle-qg7bg
@thuyle-qg7bg 6 ай бұрын
@@MediMyst , thanks you
@MediMyst
@MediMyst 5 ай бұрын
My friend from Toronto but livining in Australia could help you:; Prof. Chien-Li Holmes-Liew's, University of Adelaide
@xianyan2339
@xianyan2339 4 ай бұрын
How did you find out about it? Like what were your symptoms since when?
@basaktamarayildirim2614
@basaktamarayildirim2614 7 ай бұрын
fantastic work !
@MediMyst
@MediMyst 6 ай бұрын
Thanks a lot!
@erikblomberg625
@erikblomberg625 7 ай бұрын
Does it cause other symptoms? I hear different things.
@MediMyst
@MediMyst 7 ай бұрын
What are they?
@erikblomberg625
@erikblomberg625 7 ай бұрын
@@MediMyst Gilbert's
@erikblomberg625
@erikblomberg625 7 ай бұрын
@@MediMyst nausea, fatigue, anxiety belly discomfort
@angelheart6216
@angelheart6216 5 ай бұрын
@@erikblomberg625 . Definitely!!! Frequently reported symptoms are: fatigue, tiredness, brain fog, headaches, poor memory, dizziness, depression, irritability, anxiety, nausea, loss of appetite, IBS, stomach pain & cramping, liver/gallbladder pain, abdominal pain, tremors, itchiness, jaundice Then there are also Commonly reported symptoms, sometimes reported symptoms & occasionally reported symptoms.
@care2023
@care2023 8 ай бұрын
Hello... Doctors Say my 8 yo son have obliterans bronchiolitis...they do CT and bronhoskophy...he have no any signs... No cough etc..he can run and play with other kids.. is there chance he dont have
@MediMyst
@MediMyst 7 ай бұрын
Close follow-up is so important. Wish you BOOP’less life:)
@vincentprocopio7850
@vincentprocopio7850 8 ай бұрын
This may be similar to left ventricular non-compaction syndrome??
@EngineerPWD
@EngineerPWD 8 ай бұрын
Sir is there any permanent treatment of pap.??????? Plzz rply
@MediMyst
@MediMyst 8 ай бұрын
Not a permanent treatment to my knowledge, but it is manageable for lifelong. Best regards.
@MediMyst
@MediMyst 8 ай бұрын
Unfortunately, there isn't a single "definite" treatment for Pulmonary Alveolar Proteinosis (PAP) that works for everyone. However, the good news is there are effective treatment options available, and the best course of action will depend on the severity of your case. Here's a breakdown of the current treatment approaches for PAP: * **Whole Lung Lavage (WLL):** This is the most common treatment for PAP. It's a procedure where a sterile saline solution is flushed through your lungs to remove excess protein buildup. WLL is usually performed under general anesthesia and may require multiple sessions depending on the severity of your condition. [Image of Whole Lung Lavage procedure] * **Medications:** While there aren't medications that definitively "cure" PAP, some medications can help manage the condition. Corticosteroids can help reduce inflammation in the lungs, which may improve symptoms. * **Lung Transplant:** In severe cases where other treatments aren't effective, a lung transplant may be an option. This is a major surgery with significant risks and complications, so it's only considered as a last resort. It's important to note that PAP is a complex condition, and ongoing research is exploring potential new treatment options. If you have PAP, it's crucial to work with a pulmonologist (lung specialist) to develop a personalized treatment plan that addresses your specific needs.
@singhjaswant3282
@singhjaswant3282 7 ай бұрын
Is 9.3 value of GM csf is normal ,,,my husband is also suffering from this so pls tell me how can I take care of him to avoid it
@mostofa93
@mostofa93 8 ай бұрын
hi dear sir , your video is good but views and subscriber low you want to more and more views?
@MediMyst
@MediMyst 7 ай бұрын
What are your suggestions?
@zainabalsalami8278
@zainabalsalami8278 8 ай бұрын
What a great explanation 👏🏼
@basaktamarayildirim2614
@basaktamarayildirim2614 9 ай бұрын
A very interesting topic :) Thanks!
@MediMyst
@MediMyst 9 ай бұрын
Thanks a lot kuzum:))
@lawrenceneufville1331
@lawrenceneufville1331 9 ай бұрын
Promo'SM 🤭
@kamal22380
@kamal22380 9 ай бұрын
My both boys having dent 1
@hannahb4669
@hannahb4669 9 ай бұрын
I know I have got SPs the beginning of 2021 I started having problems with my muscle. On my left hand side, has time went on? It's start getting worse now it's night and day. It's all over my body From my torso and arms and nick..I have a lot of muscle spasms Had blood test done this year. 2024 Come back negative but I know I have got it. Sps So now they are going to do a procedure where they, but little Electros needles into my muscle and test my muscles why they are going into spasm and why. .... I have heard it takes up to 7 years. To be diagnosed with sps. So I am three years in at the moment
@MediMyst
@MediMyst 9 ай бұрын
Wish you quick recovery:)
@GracielaSalas-yz8ij
@GracielaSalas-yz8ij 11 ай бұрын
WELL I HAVE VERY BAD STROKE 5 TO BACK I RARE DISEASE MOYA MOYA MOYA I DUE STROKE 😢I TALK ANYMORE I HAVE G-TUBE IT'S FEED TUBE IT'S VERY PAINFUL FOR ME 😢SO HARD FOR ME EVERYDAY SO HEART BROKE 💔 😢 I HAVE GOING THE 💔 SPEECH 💬 THERAPY SHOW ME HOW TALK AGAIN SO VERY SOON UNTIL 💔 😢 GUYS UNDERSTAND THIS RARE DISEASE MOYA MOYA MOYA MOYA MOYA MOYA MOYA MOYA MOYA MOYA MOYA MOYA MOYA MOYA MOYA MOYA MOYA THEN🎉GUYS UNDERSTAND 😂IT I 💔 😢 CRY 😢 😭 💔 ALOT EVERYDAY 💔 😢 NOBODY TALK ANYMORE BECAUSE 💔 😢 RARE DISEASE 💔 😢 JUST EVERYONE JUST 💔 😢 PRAY 🙏 🤲 🕍 🕌 ⛪️ 🛕 🙏 🤲 🕍 🕌 ⛪️ 🛕 TODAY EVERYONE I CAN'T SMILE ANYMORE 💔 😢 ANYMORE 😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢
@shellbacksclub
@shellbacksclub 11 ай бұрын
Gotta be a way to stop it!!
@shellbacksclub
@shellbacksclub 11 ай бұрын
Fix it already!!
@mariohood789
@mariohood789 11 ай бұрын
*promo sm* 💞