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You and MDS
Canada
Registrace 5. 03. 2018
This channel is created for patients with MDS and their families and caregivers. It serves as an educational video resource with easy-to-understand animations, discussions featuring noted MDS experts, and patient interviews that will help you to understand key topics related to Myelodysplastic Syndromes.
Understanding Genetic Mutations in MDS
Learn more about MDS at www.YouAndMDS.com
MDS is very different from person to person, so learning your mutation profile is important. Knowing what mutations you have can help you and your doctor understand how you are likely to be affected by your MDS, including how you will respond to certain treatments. Watch to learn about genetic changes in myelodysplastic syndromes (MDS), and the many different driver mutations that are associated with MDS. Some mutated genes are associated with lower-risk disease, while others may indicate greater risk. Your mutation profile can change over time so it is important to repeat the testing at different stages of your treatment. The more you know about your genetic makeup in MDS, the more you will understand the outlook and in some cases, the treatment that is most likely to be effective.
MDS is very different from person to person, so learning your mutation profile is important. Knowing what mutations you have can help you and your doctor understand how you are likely to be affected by your MDS, including how you will respond to certain treatments. Watch to learn about genetic changes in myelodysplastic syndromes (MDS), and the many different driver mutations that are associated with MDS. Some mutated genes are associated with lower-risk disease, while others may indicate greater risk. Your mutation profile can change over time so it is important to repeat the testing at different stages of your treatment. The more you know about your genetic makeup in MDS, the more you will understand the outlook and in some cases, the treatment that is most likely to be effective.
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Video
Mutation-Driven Therapy in MDS
zhlédnutí 3,7KPřed 2 lety
Learn more about MDS at www.YouAndMDS.com Mutation-driven therapy is treatment based on the mutations, or changes, in your genes. Knowing what mutations you have helps your doctor predict how your body will respond to MDS treatment. In fact, it can help them choose a treatment that targets your specific mutations. Watch to learn how mutation-driven therapy works, the genetic mutations commonly ...
Becky's story: What is your MDS gene mutation profile? When and how were you tested for it?
zhlédnutí 739Před 2 lety
Learn more about MDS at www.YouAndMDS.com Becky talks about her MDS gene mutation profile, SF3B1, and the experiences she had with diagnosis and testing. She also talks about her MDS journey thus far and the learnings she has had along the way.
Which genetic mutations and cytogenetic changes have a more favorable response to MDS treatment?
zhlédnutí 234Před 2 lety
Learn more about MDS at www.YouAndMDS.com Prof. Valeria Santini, an expert on MDS from the University of Florence, discusses what we currently know about genetic mutations and cytogenetic changes associated with better myelodysplastic syndromes (MDS) treatment outcomes. For example, changes in chromosome 5 (some 5q deletions) can indicate a favorable response to treatment with lenalidomide. A m...
Donna's story: What is your MDS gene mutation profile? When and how were you tested for it?
zhlédnutí 776Před 2 lety
Learn more about MDS at www.YouAndMDS.com Donna talks about her MDS gene mutation profile at the time of her MDS diagnosis, which included SRFS2, ASXL1, and on subsequent testing, RUNX1 and TET2. Her mutation profile changed over time and recent testing has revealed mutations in genes EP300, ETNK1, IDH2, and SF3B1.
Holly's story: What is your MDS gene mutation profile? When and how were you tested for it?
zhlédnutí 257Před 2 lety
Learn more about MDS at www.YouAndMDS.com Holly talks about her MDS gene mutation profile, which is a TP53 gene mutation, and the experiences she had with her MDS diagnosis and mutation testing.
Becky's story: What advice do you have for other MDS patients about genetic testing?
zhlédnutí 232Před 2 lety
Learn more about MDS at www.YouAndMDS.com Becky shares her advice for other people with MDS about genetic testing. She found it reassuring to have her testing done. She recommends that other MDS patients get genetic sequencing done because it helps identify treatment options (including the possibility of participating in clinical trials) and helps to determine the outlook for each person.
Donna's story: What advice do you have for other MDS patients about genetic testing?
zhlédnutí 379Před 2 lety
Learn more about MDS at www.YouAndMDS.com Donna shares her advice about genetic testing for other people with MDS. She recommends that patients talk to their doctors about getting testing because the results help direct treatment. She says it is important not to panic when you are first diagnosed with MDS. She feels there is more hope now than ever before because of new research and new treatme...
Holly's story: What advice do you have for other MDS patients about genetic testing?
zhlédnutí 167Před 2 lety
Learn more about MDS at www.YouAndMDS.com Holly shares her advice and strongly recommends that other people with MDS get genetic testing. She says it is critically important in helping determine your treatment plan.
Becky's story: How has your gene mutation profile affected your MDS treatment experience?
zhlédnutí 75Před 2 lety
Learn more about MDS at www.YouAndMDS.com Becky talks about how her MDS gene mutation profile has affected her treatment experience, and how her gene mutation profile has evolved over time.
Donna's story: How has your gene mutation profile affected your MDS treatment experience?
zhlédnutí 223Před 2 lety
Learn more about MDS at www.YouAndMDS.com Donna discusses how her MDS gene mutation profile has affected her treatment experience. Her mutation profile has changed over time, and the accumulating number of mutations worries her a little. She discusses with Dr. Rafael Bejar how certain mutations may categorize a person at a higher risk, which influences when to start treatment and which treatmen...
Holly's story: How has your gene mutation profile affected your MDS treatment experience?
zhlédnutí 239Před 2 lety
Learn more about MDS at www.YouAndMDS.com Holly discussed how her MDS gene mutation profile has affected her treatment choices and the timing of her stem cell transplant. She discusses with Dr. Rafael Bejar how her TP53 gene mutation is associated with a less favorable response to MDS treatment.
Becky's story: What has been the greatest success with your MDS treatment?
zhlédnutí 96Před 2 lety
Learn more about MDS at www.YouAndMDS.com Becky talks about some of the successes she has had with her MDS treatment. The biggest success she has had is knowing that she is in good hands with her care team at the MDS Center of Excellence where she is treated. She is receiving chemotherapy and getting transfusions when needed.
Donna's story: What has been the greatest success with your MDS treatment?
zhlédnutí 784Před 2 lety
Learn more about MDS at www.YouAndMDS.com Donna describes the successes she has had with her MDS treatments. She talks about her platelet counts after three cycles of decitabine and shares her experience in the hope that it will help other patients with MDS.
Holly's story: What has been the greatest success with your MDS treatment?
zhlédnutí 167Před 2 lety
Learn more about MDS at www.YouAndMDS.com Holly describes the successes she has had with her MDS treatment journey. She has gained knowledge about MDS which has empowered her self-advocacy skills. She is happy to share her knowledge and experiences with other young MDS patients facing such a rare diagnosis.
Becky's story: What has been the greatest challenge with your MDS treatment?
zhlédnutí 61Před 2 lety
Becky's story: What has been the greatest challenge with your MDS treatment?
Donna's story: What has been the greatest challenge with your MDS treatment?
zhlédnutí 122Před 2 lety
Donna's story: What has been the greatest challenge with your MDS treatment?
Holly's story: What has been the greatest challenge with your MDS treatment?
zhlédnutí 119Před 2 lety
Holly's story: What has been the greatest challenge with your MDS treatment?
How does my genetic mutation profile impact the treatment of my MDS?
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How does my genetic mutation profile impact the treatment of my MDS?
What are mutation-driven MDS treatments?
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What are mutation-driven MDS treatments?
What are the goals of mutation-driven MDS treatments?
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What are the goals of mutation-driven MDS treatments?
How does my MDS genetic mutation permit personalized treatment decisions?
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How does my MDS genetic mutation permit personalized treatment decisions?
What questions should I ask my doctor about mutation-driven MDS treatments?
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What questions should I ask my doctor about mutation-driven MDS treatments?
What are the challenges to mutation-driven MDS treatment?
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What are the challenges to mutation-driven MDS treatment?
When should genetic testing for MDS be done?
zhlédnutí 58Před 2 lety
When should genetic testing for MDS be done?
How do MDS genetic mutations influence decisions for stem cell transplant?
zhlédnutí 418Před 2 lety
How do MDS genetic mutations influence decisions for stem cell transplant?
What is a genetic mutation, a biomarker, and cytogenetic analysis in MDS?
zhlédnutí 131Před 2 lety
What is a genetic mutation, a biomarker, and cytogenetic analysis in MDS?
Why is understanding genetic mutations and cytogenetics in MDS important?
zhlédnutí 161Před 2 lety
Why is understanding genetic mutations and cytogenetics in MDS important?
Is an MDS-related genetic mutation something I was born with or something that occurred later on?
zhlédnutí 102Před 2 lety
Is an MDS-related genetic mutation something I was born with or something that occurred later on?
How do my genetic mutations influence MDS risk?
zhlédnutí 64Před 2 lety
How do my genetic mutations influence MDS risk?
is 312 high? My doc is worrying me... my albumine is at 53-55 (5.3-5.5)
Your hematologist will know your genetics immediately
Thank you so much!
My mother was diagnosed with MDS
Wow it’s helped me a lot thank you
Quite satisfactory,,thanks
Wow nice one👌
THANK YIU SOOOOO MUCH
What if you don't have MDS
Thanku for very good explanation 🥰😊👍
Sooo Would Ozone Therapy be a Good thing Too??
My sister has MDS.Just 63 years old.She seeks her care on Monday28th.
Thanks alot great 👍
Most welcome 😊 For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/
Love how they skipped Over the colonoscopy and endoscopy and went Straight bone marrow biopsy. Keiser stretched this out to over 3 months to get what the could have gotten in a week!
Thanks for your feedback! For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/
It's quite helpful ... Thanks for making such videos
It's our pleasure. For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/
My favorite Larry Hagman passed away from Myelodysplastic Syndrome 😔😣😟😥😪😢
Thanks for letting us know. For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/
Great
Most welcome 😊 For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/
Nice job 👏
Thanks 😁 For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/
You can also donate blood. Great video.
Thanks! For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/
Very clearly explained
Glad you think so! For more MDS information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/
Genesis 9:4 ESV / 223 helpful votes But you shall not eat flesh with its life, that is, its blood. Leviticus 17:14 ESV / 212 helpful votes For the life of every creature is its blood: its blood is its life. Therefore I have said to the people of Israel, You shall not eat the blood of any creature, for the life of every creature is its blood. Whoever eats it shall be cut off. Acts 15:20 ESV / 179 helpful votes But should write to them to abstain from the things polluted by idols, and from sexual immorality, and from what has been strangled, and from blood. Leviticus 3:17 ESV / 141 helpful votes It shall be a statute forever throughout your generations, in all your dwelling places, that you eat neither fat nor blood.” Acts 15:29 ESV / 135 helpful votes That you abstain from what has been sacrificed to idols, and from blood, and from what has been strangled, and from sexual immorality. If you keep yourselves from these, you will do well. Farewell.” Deuteronomy 12:23 ESV / 133 helpful votes Only be sure that you do not eat the blood, for the blood is the life, and you shall not eat the life with the flesh. Leviticus 17:10 ESV / 112 helpful votes “If any one of the house of Israel or of the strangers who sojourn among them eats any blood, I will set my face against that person who eats blood and will cut him off from among his people. Deuteronomy 12:16 ESV / 92 helpful votes Only you shall not eat the blood; you shall pour it out on the earth like water. Mark 7:18-19 ESV / 86 helpful votes And he said to them, “Then are you also without understanding? Do you not see that whatever goes into a person from outside cannot defile him, since it enters not his heart but his stomach, and is expelled?” (Thus he declared all foods clean.) Romans 14:1-23 ESV / 80 helpful votes Helpful Not Helpful As for the one who is weak in faith, welcome him, but not to quarrel over opinions. One person believes he may eat anything, while the weak person eats only vegetables. Let not the one who eats despise the one who abstains, and let not the one who abstains pass judgment on the one who eats, for God has welcomed him. Who are you to pass judgment on the servant of another? It is before his own master that he stands or falls. And he will be upheld, for the Lord is able to make him stand. One person esteems one day as better than another, while another esteems all days alike. Each one should be fully convinced in his own mind. ...
Inositol I6B reduces high ferritin. Drink coffee or calcium based foods up your D3 levels B8 all this lowers ferritin levels
It sounds overwhelming. My relative has this new diagnosis. Praying for all of you!
Thanks for your feedback. For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/
What a an incredible explanation...
Glad you liked it! For more MDS information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/
Men don’t need iron woman do, donate blood 🩸 removes iron overload so you don’t cook your heart
How often should we donate to keep iron levels from getting too high?
💕💕💕💕💕💕 beautiful explanation
Glad you liked it. For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/
Well explained. Thank you !!
Glad it was helpful! For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/
Thank you for information
You are Most welcome 😊 For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/
Great video
Thanks!
Thanks its well and clear to understand
Thanks please share with friends and family! For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/
Thank you so much Mam
Thanks Soo much You saved my semester 😂😂✋
Lenolinamide
Azacitidine
I have been reading about blood transfusions and all the diseases that a person can potentially catch from them. I just found out (by reviewing my medical records) that I had blood transfusions some years ago while in an ICU on a ventilator because I had hospital-acquired double pneumonia and hospital-acquired septic shock and was not expected to survive. My life has been destroyed as I am now permanently disabled and suffer daily. (My underlying condition was a UTI and a kidney stone that I passed on my own.) My question is: How safe is medicine in general? It doesn't seem very safe to me, given all the unknowns (everything I read goes like this, 'the tests are not 100 percent accurate', 'we do not know a lot about what causes it', 'the treatments are experimental', 'there are no treatments'; 'try ibuprofen', etc, etc, etc, ad nauseum.) Then there are all the diseases one can potentially acquire while hospitalized (e.g., MRSA, C-diff, sepsis, pneumonia, etc., etc., etc., ad nauseum.) Personally, unless I am bleeding out, I will never again allow myself to be admitted to a hospital. The procedure performed almost killed me; however, I had never before been sick or hospitalized and I (stupidly) blindly trusted the urologist who said he 'needed to look around inside my kidney.' (I never saw him again after I went septic; he abandoned me.) So, given my personal experiences and all that is happening in the world right now, I really want to know what good medicine and big pharma do (unless, of course, you have money and influence and are, therefore, the recipient of only the very best medical care that money CAN buy.) NOTE: IF NOT FOR NURSES (who, in my experience, are the real heroes and lifesavers), many would die. I am certain I would have. It was the nurses and one ICU physician (with God's guiding hand) who saved my life. After I was able to be taken off the ventilator, I was transferred to the critical care respiratory unit. During my additional 12 days there, it was the nurses who managed my care (a hospitalist dr would pop in every few days for a minute or two.) When I was released I went to a urologist 60 miles from where I reside; he discovered a mass in my kidney which he successfully removed. (The 1st dr and hospital released me knowing there was a mass in my kidney; they just never bothered to tell me. Maybe they underestimated my intelligence. Or maybe they just did not give a damn, since single, older females (I was 55 at the time), in general, get worse quality health care. Watch John Oliver's segment titled, 'Bias in Medicine' on YT (when I saw this, it explained a lot about the way I was/am treated by doctors...at least that's how it is where I live in NYS.)
Thank you. I’m very anemic and contemplating going to the hospital because I’m having chest pains/palpitations and can’t breathe. I know it’s my iron. I have been told a blood transfusion helps immediately. The previous iron infusion didn’t help me at all. Idk what to do now after reading your comment. I hope you’re doing well now.
No mention of eliminating cast iron frying pans, vegan diets to eliminate taking in more iron, avoiding dried fruit, like raisins. Only drugs with side effect. Not happy with this session!
Thank You, sir. I am currently [late 2020] in the low-moderate risk category, with sub-par Red Blood Cells but not needing transfusions. There are a lot of MDS vids on CZcams, many are long and very technical. Yours is short and clear enough for me to send to friends who ask "What is MDS." Thank You again.
Thanks for your kind feedback. For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/
Chelation takes all metals out of the body. Which is a painful process leaves you weak.
my husband has been diagnosed, but we haven't had the exact kind related to us yet. But Dr wants to do chemo. Is that safe?
Please check with your Doctor. For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/
My mom have MDS in 2019 who was 66 years old and had done the chemotherapy ,but get the negative result,. Now she need the blood transfusions every week . So sad from Hong Kong.
My pancytopenia/neutropenia/thrombocytopenia/MDS (yes, I have had all four including more than one at the same time) was caused by exposure to poisons while serving in the military. My liver has failed, my kidneys are almost gone, I have c-ptsd, my heart has murmurs and arrhythmias in every quadrant, I have type 2 diabetes, edema, seizures, and other afflictions which have astounded every doctor/specialist I have every seen. (I estimate at least 50) Everyone diagnosed my illnesses as idiopathic and sent me on my way with their deepest condolences and apologies for being unable to offer me anything in the way of treatment, while at the same time, dismissing my claims that it had to be exposure to substances while serving in the military. I finally have convinced several of my doctors that it had to be exposure that has destroyed my life and health. Of course, the military refuses to own up to this. The main substances were; beryllium, benzene, silica(s), chromium, lithium, vanadium, with the worst likely being depleted uranium. Over 25 years ago, I was 'given' 6 months to live. I refuse chemotherapy, bone marrow transplants, and do not take blood due to my spiritual beliefs, so what has kept me alive? Prayer and belief in God and Christ. It's that simple.
My son is myeloid displastic syndrome, what I can do 😥😥😥today is bonemarrow procedure, all bloods are low, specially hemoglobin and pletelet 😥😥😥
Is everything ok ?
Thanks for letting us know. For more information check out www.youandmds.com/en-mds/home or www.mds-foundation.org/
I have MDS and i'm 33 years old 💔😢
Thanks for letting us know. Please reach out to the MDS Foundation visit www.mds-foundation.org/.
Where u go treatment
Available this medicine ?????
Well done
Thanks! For more info please visit www.mds-foundation.org/
Good
Thanks
Thank you for your video! My husband is trying to get to the bottom of his condition of low red blood cells count, we did a bone marrow a year ago and it was normal, did another one last week, waiting for the results but his Dr. told us he can't find a cause and recommended we go to Miami and see another Dr.
Thanks for letting us know. Please visit www.mds-foundation.org/
Nice explanation
Thanks for letting us know. Please visit www.mds-foundation.org/
Thank you for sharing. I learned a lot. God bless. You Rock.
We added a new content on the MDS-related Anemia topic. It includes experts discussion videos and more interviews with patients who have MDS-related Anemia. Hope you will learn more and, please, share it with others.