You and MDS
You and MDS
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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.
Переглядів: 10 396

Відео

Mutation-Driven Therapy in MDS
Переглядів 3,8 тис.2 роки тому
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?
Переглядів 7542 роки тому
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?
Переглядів 2362 роки тому
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?
Переглядів 7922 роки тому
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?
Переглядів 2592 роки тому
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?
Переглядів 2452 роки тому
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?
Переглядів 3832 роки тому
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?
Переглядів 1692 роки тому
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?
Переглядів 772 роки тому
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?
Переглядів 2232 роки тому
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?
Переглядів 2432 роки тому
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?
Переглядів 972 роки тому
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?
Переглядів 8082 роки тому
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?
Переглядів 1692 роки тому
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?
Переглядів 632 роки тому
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?
Переглядів 1232 роки тому
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?
Переглядів 1192 роки тому
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?
Переглядів 2042 роки тому
How does my genetic mutation profile impact the treatment of my MDS?
What are mutation-driven MDS treatments?
Переглядів 3792 роки тому
What are mutation-driven MDS treatments?
What are the goals of mutation-driven MDS treatments?
Переглядів 412 роки тому
What are the goals of mutation-driven MDS treatments?
How does my MDS genetic mutation permit personalized treatment decisions?
Переглядів 262 роки тому
How does my MDS genetic mutation permit personalized treatment decisions?
What questions should I ask my doctor about mutation-driven MDS treatments?
Переглядів 642 роки тому
What questions should I ask my doctor about mutation-driven MDS treatments?
What are the challenges to mutation-driven MDS treatment?
Переглядів 542 роки тому
What are the challenges to mutation-driven MDS treatment?
When should genetic testing for MDS be done?
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When should genetic testing for MDS be done?
How do MDS genetic mutations influence decisions for stem cell transplant?
Переглядів 4292 роки тому
How do MDS genetic mutations influence decisions for stem cell transplant?
What is a genetic mutation, a biomarker, and cytogenetic analysis in MDS?
Переглядів 1392 роки тому
What is a genetic mutation, a biomarker, and cytogenetic analysis in MDS?
Why is understanding genetic mutations and cytogenetics in MDS important?
Переглядів 1672 роки тому
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?
Переглядів 1082 роки тому
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?
Переглядів 642 роки тому
How do my genetic mutations influence MDS risk?

КОМЕНТАРІ

  • @noobiedooby26
    @noobiedooby26 9 місяців тому

    is 312 high? My doc is worrying me... my albumine is at 53-55 (5.3-5.5)

  • @Anti-leftist7777
    @Anti-leftist7777 10 місяців тому

    Your hematologist will know your genetics immediately

  • @yourPTHannah
    @yourPTHannah 10 місяців тому

    Thank you so much!

  • @meredithknight-bx8gt
    @meredithknight-bx8gt 10 місяців тому

    My mother was diagnosed with MDS

  • @user-ve3he9cu7k
    @user-ve3he9cu7k 10 місяців тому

    Wow it’s helped me a lot thank you

  • @waniaarif3390
    @waniaarif3390 Рік тому

    Quite satisfactory,,thanks

  • @dianeteta6057
    @dianeteta6057 Рік тому

    Wow nice one👌

  • @amymontoya9098
    @amymontoya9098 Рік тому

    THANK YIU SOOOOO MUCH

  • @shyrellspicer5173
    @shyrellspicer5173 Рік тому

    What if you don't have MDS

  • @liyasherin1232
    @liyasherin1232 Рік тому

    Thanku for very good explanation 🥰😊👍

  • @beckylucas9360
    @beckylucas9360 Рік тому

    My sister has MDS.Just 63 years old.She seeks her care on Monday28th.

  • @israrshahi6145
    @israrshahi6145 2 роки тому

    Thanks alot great 👍

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Most welcome 😊 For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/

  • @katherinequesada7382
    @katherinequesada7382 2 роки тому

    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!

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Thanks for your feedback! For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/

  • @farzanaalam2154
    @farzanaalam2154 2 роки тому

    It's quite helpful ... Thanks for making such videos

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      It's our pleasure. For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/

  • @HappyBarbieFamilyShow516
    @HappyBarbieFamilyShow516 2 роки тому

    My favorite Larry Hagman passed away from Myelodysplastic Syndrome 😔😣😟😥😪😢

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Thanks for letting us know. For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/

  • @dr.gourisharma824
    @dr.gourisharma824 2 роки тому

    Great

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Most welcome 😊 For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/

  • @madhan.s901
    @madhan.s901 2 роки тому

    Nice job 👏

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Thanks 😁 For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/

  • @PythagorasHyperborea
    @PythagorasHyperborea 2 роки тому

    You can also donate blood. Great video.

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Thanks! For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/

  • @sreenivasulusree5123
    @sreenivasulusree5123 2 роки тому

    Very clearly explained

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Glad you think so! For more MDS information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/

  • @workingman7865
    @workingman7865 3 роки тому

    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. ...

  • @sonja0707
    @sonja0707 3 роки тому

    Inositol I6B reduces high ferritin. Drink coffee or calcium based foods up your D3 levels B8 all this lowers ferritin levels

  • @jaycole2109
    @jaycole2109 3 роки тому

    It sounds overwhelming. My relative has this new diagnosis. Praying for all of you!

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Thanks for your feedback. For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/

  • @ashfaqahmadofficial1257
    @ashfaqahmadofficial1257 3 роки тому

    What a an incredible explanation...

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Glad you liked it! For more MDS information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/

  • @erikgarcia3778
    @erikgarcia3778 3 роки тому

    Men don’t need iron woman do, donate blood 🩸 removes iron overload so you don’t cook your heart

    • @creativesolutions902
      @creativesolutions902 Рік тому

      How often should we donate to keep iron levels from getting too high?

  • @papiyadas2597
    @papiyadas2597 3 роки тому

    💕💕💕💕💕💕 beautiful explanation

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Glad you liked it. For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/

  • @naitikxvi
    @naitikxvi 3 роки тому

    Well explained. Thank you !!

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Glad it was helpful! For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/

  • @nehagoyal9780
    @nehagoyal9780 3 роки тому

    Thank you for information

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      You are Most welcome 😊 For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/

  • @_.you._1215
    @_.you._1215 3 роки тому

    Great video

  • @mudogopaul2796
    @mudogopaul2796 3 роки тому

    Thanks its well and clear to understand

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Thanks please share with friends and family! For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/

  • @rohitnursingacademy2150
    @rohitnursingacademy2150 3 роки тому

    Thank you so much Mam

  • @audreyjoy7993
    @audreyjoy7993 3 роки тому

    Thanks Soo much You saved my semester 😂😂✋

  • @immadisarojini2775
    @immadisarojini2775 3 роки тому

    Lenolinamide

  • @immadisarojini2775
    @immadisarojini2775 3 роки тому

    Azacitidine

  • @Justice4ALL.120
    @Justice4ALL.120 3 роки тому

    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.)

    • @BS-dq1kz
      @BS-dq1kz 10 місяців тому

      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.

  • @pennynolan7597
    @pennynolan7597 3 роки тому

    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!

  • @paddywhack9261
    @paddywhack9261 3 роки тому

    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 UA-cam, 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.

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Thanks for your kind feedback. For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/

  • @themusicman2005
    @themusicman2005 3 роки тому

    Chelation takes all metals out of the body. Which is a painful process leaves you weak.

  • @katc2345
    @katc2345 3 роки тому

    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?

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Please check with your Doctor. For more information check out www.youandmds.com/en-mds/home or visit www.mds-foundation.org/

  • @bbchung4452
    @bbchung4452 4 роки тому

    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.

  • @mikepreston-engel8869
    @mikepreston-engel8869 4 роки тому

    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.

  • @jesmartv4885
    @jesmartv4885 4 роки тому

    My son is myeloid displastic syndrome, what I can do 😥😥😥today is bonemarrow procedure, all bloods are low, specially hemoglobin and pletelet 😥😥😥

    • @ghettoblaster4life1
      @ghettoblaster4life1 3 роки тому

      Is everything ok ?

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Thanks for letting us know. For more information check out www.youandmds.com/en-mds/home or www.mds-foundation.org/

  • @memebakri9178
    @memebakri9178 4 роки тому

    I have MDS and i'm 33 years old 💔😢

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Thanks for letting us know. Please reach out to the MDS Foundation visit www.mds-foundation.org/.

    • @alankraj9139
      @alankraj9139 Рік тому

      Where u go treatment

  • @masterofmobile7701
    @masterofmobile7701 4 роки тому

    Available this medicine ?????

  • @masterofmobile7701
    @masterofmobile7701 4 роки тому

    Well done

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Thanks! For more info please visit www.mds-foundation.org/

  • @masterofmobile7701
    @masterofmobile7701 4 роки тому

    Good

  • @masterofmobile7701
    @masterofmobile7701 4 роки тому

    Thanks

  • @crazyforcrotchet
    @crazyforcrotchet 5 років тому

    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.

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Thanks for letting us know. Please visit www.mds-foundation.org/

  • @madhukardeshpande563
    @madhukardeshpande563 5 років тому

    Nice explanation

    • @YouAndMDS
      @YouAndMDS 2 роки тому

      Thanks for letting us know. Please visit www.mds-foundation.org/

  • @randilarocca8812
    @randilarocca8812 5 років тому

    Thank you for sharing. I learned a lot. God bless. You Rock.

    • @YouAndMDS
      @YouAndMDS 5 років тому

      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.

  • @varshavishwakarma6008
    @varshavishwakarma6008 5 років тому

    Thanku