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Пікірлер
@martinaharrisondefault5027 Сағат бұрын
Dr Berg on KZbin suggests natural medicine you haven't suggested here. I recommend people try that first
@Just_Jan464 13 күн бұрын
Do you think they’re close to finding a cure for pnh?
@bobc.7740 17 күн бұрын
How nice it would be to have doctors and others who care about her health. Mine don’t care one bit. There is no way I can call my dr.
@Warriork681 21 күн бұрын
What is story of your family? Any of you were diagnosed and treated?
@AAMDSIF 16 күн бұрын
You can find out more about Mario and his family in this podcast episode recording: www.aamds.org/podcast/conversation-patient-mario-rivera-his-experience-aplastic-anemia
@emmanuelking9988 23 күн бұрын
I have multiple myeloma and this presentation was extremely helpful and informative. Thank you very much.
@taylorvalley2013 Ай бұрын
So why am I being a young patient (when diagnosed) of yours back during COVID told that I don’t have the jak2 mutation after a bmb has been seen by multiple doctors including you and told that my blood levels are extremely high but aloud to be at 50 before I get phlebotomy and not other treatments other than follow ups aside from aspirin and consults from my local hematologist…who has said herself has zero specialty in this condition! Yet they are aloud to allow me to live dangerously high because of you not caring to continue seeing me….DR. HOBBS
@deborahdarroyo Ай бұрын
Did Medicare change their coverage guidelines?
@AAMDSIF Ай бұрын
Here is information for MDS in particular: www.cms.gov/medicare-coverage-database/view/ncacal-decision-memo.aspx?proposed=N&ncaid=312
@stephanies.764 Ай бұрын
How are you doing today? I see this was 8 years ago video. My daughter was just diagnosed with aplastic anemia and it sound like we have a long road ahead of us. Hope you are doing well in 2024. God Bless. ❤️
@CASHSEC 2 ай бұрын
Excellent. I have been told I have P N but nothing on its cause. How do I ask my Doc.
@AliHeidarzadeh-u9n 2 ай бұрын
when i was 10,i was diagnosed with aplastic anemia which brought pnh after 3 years
@darrylthehorntoadpiper 2 ай бұрын
Very good talk & information on neuropathy, thank you. 👍👍👍
@AAMDSIF 2 ай бұрын
Glad it was helpful!
@sumithecat91 2 ай бұрын
I was diagnosed with pnh in 2021 and was on trail meditation for 2 years. Suddenly, the trail shut down n left in the dark now with no meditation .
@monkimo 2 ай бұрын
Do you recommend TMP-SMX during cyclosporine?
@AAMDSIF 2 ай бұрын
We cannot recommend any treatments for patients; AAMDSIF is a patient advocacy organization. But if you are interested in having a second opinion, this link to find a specialist near you may help: www.aamds.org/support/find-specialist.
@juanzettawhite4540 3 ай бұрын
Have had MDS for almost year. Plates are low , and white blood low and blood 11.7 and I have diabetes. Feel good and take care of my self and 3 dogs. My dogs are my life. I start chemo today. O yea I am 75. God's will to be done in my life. Had blood 1 time and plates 1 time in a year. . .
@juanzettawhite4540 3 ай бұрын
A very good ❤ speech
@AAMDSIF 3 ай бұрын
@juanzettawhite4540, We hope you will be feeling better soon. If you want to chat with someone who has had MDS similar to you, we can make the connection. Please call 800-279-7202, Option 2 or email [email protected]. Also, you can find out more about MDS here: www.aamds.org/mds, and you can find webinars and support groups under the "Patients and Families" tab. We're here for you - please call or write.
@Tennisplayer95-n2p 3 ай бұрын
I've had three of these done.
@juanmaradei3858 3 ай бұрын
Excelent talk , very usefull!!!!
@AAMDSIF 3 ай бұрын
So glad you found it useful!
@DeborahRobinson9Lopez-h1s 3 ай бұрын
Williams Thomas Johnson Paul Lewis Richard
@susiebilk9905 4 ай бұрын
I have obliterated bronchitis, no transplant, was hoping for info on stages
@AAMDSIF 4 ай бұрын
Here are links to this information: www.lung.org/lung-health-diseases/lung-disease-lookup/popcorn-lung www.ncbi.nlm.nih.gov/books/NBK441865/
@JMSsssssss 4 ай бұрын
My first abnormal bone marrow biopsy was 30 years ago. Chromosomally normal but hypoplastic. About 15 years later I had my third biopsy. Trisomy 8 was present at this time. 8 years after that in 2017 I had my 4th and last bone marrow biopsy still hypoplastic and trisomy 8 still present. I am now followed yearly at Dana Farber with a differential dx of chronic idiopathic aplastic anemia vs hypoplastic MDS. No genetic findings to explain things. No history of chemotherapy. 30 years. Why is this happening? So many years.
@AAMDSIF 4 ай бұрын
The past 30 years have been quite a journey for you. Not having a diagnosis must have been frustrating and overwhelming for you. Talking with others who understand all the challenges you have been facing can be very helpful. AAMDS has virtual support groups where you can talk with others who have been diagnosed with aplastic anemia. www.aamds.org/support/patient-family-support-groups
@livewire_podcast 4 ай бұрын
So half half match works ??????
@AAMDSIF 4 ай бұрын
Half-match, or haploidentical transplants, can be successful. Here is a webinar recording for more information: What You Need to Know about Haploidentical and Cord Blood Transplants kzbin.info/www/bejne/eauXoH-Mm6Zko8U If you'd like to contact our Patient Advocacy team, please email [email protected] with your question. Thanks.
@livewire_podcast 4 ай бұрын
@@AAMDSIF thanks
@livewire_podcast 4 ай бұрын
@@AAMDSIF I am now on observation after Rabbit ATG since Horse failed. Am no longer on daily platelets or blood transfusions but on heavy drug with a doctor's appointment every week for the next three weeks. My bro was tested but results came out (not fully a match) I just hope I'll stabilise with the last ATG. But your story is like mine even the dates 😁😁😁
@AAMDSIF 4 ай бұрын
@@livewire_podcast If you'd like to chat with patients in a (Zoom) virtual support group, check out this page where we list upcoming online meetups: www.aamds.org/support/patient-family-support-groups. Other patients can share their experiences with you if you like!
@kikigirlkauai 4 ай бұрын
This is wonderful. My former spouse is about to go through a stem cell bone marrow transplant. We thought it was going to be outpatient reduced intensity. But today found out the osteoblasts are higher than they want. He’s 73. Was working 4-5 shifts at a few wineries, just a year ago. Diagnosis of MDS was late April. Transfusions weekly and decitabine. 5 weeks in the hospital. Scary. Thank you for this video. ❤
@BenBradley-e8k 4 ай бұрын
Gonzalez Brenda Anderson Jessica Davis Anthony
@bebebabes5349 4 ай бұрын
How about steroid?
@BigCofe9000 4 ай бұрын
Alachbad Sudan sudane is not available at the moment
@machellesimmons8597 5 ай бұрын
Excellent Info. Thank you. I'm high-risk & need a bone marrow transplant. I'm currently getting blood & platelet transfusions weekly 🙇🏽♀️ I look forward to a better quality of life.😊 learning is Hope
@AAMDSIF 5 ай бұрын
Hi! So glad this was useful. Here are more webinars for you, and you can choose to search by MDS or Transplant to find out what you are looking for! Please write us if you are looking for more information at [email protected], or visit the website, aamds.org. Take care!
@IsrarIsrar-xi6pc 5 ай бұрын
Hello sir my name is israr shah I'm diagnosed pnh patient 1year ago due you help
@IsrarIsrar-xi6pc 5 ай бұрын
I'm very confused please help me I'm from. Pakistan 🇵🇰 kpk
@AAMDSIF 5 ай бұрын
Alexion has a global access program to bring treatments to patients. His doctor would need to complete the necessary paperwork, alexion.com/our-commitment/managed-access-programs. Clinical trials are recruiting all of the world for PNH. Here is a listing of the trials currently recruiting patients, clinicaltrials.gov/search?cond=PNH%20-%20Paroxysmal%20Nocturnal%20Hemoglobinuria&aggFilters=status:rec. See if any of these locations would be close for him.
@bobc.7740 5 ай бұрын
How does the information you find at your office get passed on to the day to day doctors treating patients with MDS?
@AAMDSIF 5 ай бұрын
AAMDSIF patient education materials are available at no cost to patients, families and health care providers. Most can be downloaded from the website, or copies can be ordered here: www.aamds.org/education/patient-guides-and-fact-sheets Health care providers can order a quantity of the patient guides and fact sheets to have in their clinics to give directly to patients. Information about AAMDSIF resources is shared with health care professionals through e-blasts, social media, medical conferences and medical education programs. Please let us know if you have other questions by emailing [email protected].
@ssss-ub6xu 5 ай бұрын
Is there any treatment for pnh
@AAMDSIF 5 ай бұрын
Yes, there are treatments for PNH. None cures the disease but they help patients live a full life. You can find more information from this recent recording: www.aamds.org/webinar/pnh-2024-philadelphia-patient-and-family-conference
@Poorna369 5 ай бұрын
What happens if a person is trasfused with 2 pint of prbc with respect to complete blood count
@AAMDSIF 5 ай бұрын
Please consult your specialist to find out your diagnosis. If you are diagnosed with a bone marrow failure disease, you can find information about aplastic anemia, MDS, or PNH on the website, aamds.org (www.aamds.org/)
@terezamagnoliadelucenafran1121 6 ай бұрын
Excelente explicação. Meu marido está com esse diagnóstico (mielo displasia)..
@SwitTuazon 6 ай бұрын
Anxiety attacked for me when i diagnosed pnh
@MayuriTarate-ye2cq 6 ай бұрын
Can you refer any references in Mumbai
@AAMDSIF 6 ай бұрын
Thank you for reaching out to us. Our contact is in New Delhi, but he might know someone in Mumbai. You can reach out to Dr. Dharma Choudhary to see if he can help with medical guidance. Dr. Dharma Choudhary Mob : +91-9971003605 Email : [email protected] Address : BLK Super Speciality Hospital Pusa Road, New Delhi-110005 Wishing you and your family all the best.
@philwhitcroft914 6 ай бұрын
Brilliant information. A absolute blessing. I’m high risk mds with 20% blasts diagnosed 12/12/23 and given 6 months to live I was placed on Inquovi 5 months ago and all bloods and markers have me in temporary? Remission. If I continue to trend with improving numbers I will have another bone marrow biopsy next month and maybe considered for a transplant after being knocked back in march by the transplant team in consideration to my blood numbers. Fantastic information Many thanks. Phil from Australia. Age 59 with no other health issues. 11/7/24
@AAMDSIF 6 ай бұрын
So great to hear from you, Phil, and to hear you are getting the treatment(s) you need. You can find more webinars here: www.aamds.org/education/patient-family-webinars, where you can search by disease type. (aamds.org/webinars) Please take care!
@philwhitcroft914 6 ай бұрын
@@AAMDSIF thanks for your help
@jenishbastola7600 Ай бұрын
@@philwhitcroft914hey phil how are you now?
@wellalynmanguray3285 6 ай бұрын
what if my fish test result for mpn panel is positive in 7qdeletion and positive in 13q.34?
@Nezuko217-tg1pg 6 ай бұрын
Hello doctor, Last year, my 25 year-old son was diagnosed with the PNH Clone medical condition, there are seven listed patients with this condition throughout Morocco - including my son. Given the unavailability of the treatment in Morocco, and its highly expensive cost anyway, I'd like to know if there are any associations that help patients who don't have the money to pay for treatment. I'd also like to know if there are any medications that reduce pain, as my son has excruciating and unbearable intestinal pain almost all the time, as well as several infections accompanied by fever and vomiting. Thank you
@nilzamaria7800 6 ай бұрын
Parabéns muito bem explicado.
@algalande 6 ай бұрын
I am diagnosed Aplastic Anaemia in 2020. Did ATG. No response. Now due to fibrosis of liver I can't undergo BMT, ATG. I know I will die soon. But you nice people keep this planet healthy, loving and blissful ❤
@gaga5964 7 ай бұрын
Have my volume as high as possible but can barely hear the presenters
@AAMDSIF 6 ай бұрын
Thank you for letting us know.
@katherinevaughn 7 ай бұрын
Thank you for sharing this information. I just got diagnosed. I'm 64 years old and I have stage 4 lung cancer and ms. I hope 🙏🏼 I can beat this! This is my 5th time fighting cancer. I am trying to learn as much as I can to fight. I read that the bone marrow transplant could heal MDS and stop the progression of MS. Do you agree with these findings? Thank you for your time and services. ❤️🙏🏼✝️
@AAMDSIF 7 ай бұрын
You may also find this recording useful about transplantation for older patients: www.aamds.org/webinar/transplant-older-patients-mds
@jenishbastola7600 Ай бұрын
Hey katherine how are you now?
@elcancerynosotros.7036 7 ай бұрын
Excellent presentation!
@AAMDSIF 7 ай бұрын
So glad you found it useful!
@Robert-lr8ve 7 ай бұрын
Just now starting to learn more about my disease outcome is not good but gives me time to prepare for my lord and Savior thank you God for your mercy amen 😊
@AAMDSIF 7 ай бұрын
Please also check out the website, aamds.org, for much more information about MDS. The disease-specific pages begin here: www.aamds.org/mds and more webinars are ready for you here: www.aamds.org/education/patient-family-webinars (filter by disease type or keyword if you like.)
@vishalrathod3371 7 ай бұрын
I am also PNH,diagnosed in 2006.FROM INDIA GUJARAT STATE
@bagdharahandicraft9202 5 ай бұрын
Pls inform me about all information,pls plsss😢
@vishalrathod3371 5 ай бұрын
@@bagdharahandicraft9202 ok
@parulagnihotri9611 Ай бұрын
Kya aapko b pnh problem h
@vishalrathod3371 Ай бұрын
@@parulagnihotri9611 yes, aapke family me bhi he kisiko?
@vishalrathod3371 Ай бұрын
@@bagdharahandicraft9202 what information you need? Please tell me
@lupelopez7970 7 ай бұрын
mi mama tiene esa enfermedad y empezo con lenalomida y tuvo reaccion alergica ahora esta tomando azacitidina tiene 85 años y le hacen transfuciones pero nonsube su hemoglobina es la tercera vez que le ponen espero que funcione tiene sindrome mieledisplasico areb 2
@lemmetellyaboutit 7 ай бұрын
My dad has this cancer and we just found out. This is going to help me be a much better support system for him to understand and ask questions as I come with him for treatments. Thank you for this presentation
@badribhattarai3781 8 ай бұрын
What will be the treatment for hMDS del 20q?.please suggest me.l am 66yrs old
@kharismarizky5949 8 ай бұрын
Hi Rohail, Thank you for sharing your experience. AA.MDS is there any AA community that we can join?
@AAMDSIF 7 ай бұрын
Hello! Yes, AAMDSIF sponsors patient-led support groups, available to anyone with a Zoom link. The June list will be posting later today, here: www.aamds.org/support/patient-family-support-groups
@primusbaraka 8 ай бұрын
informative summary, thank you
@madelinvidaurrealdana2316 8 ай бұрын
Buenas tardes soy de perú, mi hijo de 12 años tiene ese diagnostico, realmente aquí no hay mucha información sobre esa enfermedad en niños, actualmente el está en tratamiento con romiplostim ( sus plaquetas se mantienen en 100k , 105k con el medicamento ) y hierro (se mantiene en 11) a mi me gustaría obtener mayor información, le agradecería.
@carmencaminero6750 8 ай бұрын
Se puso su hijo la vacuna kovid?
@AAMDSIF 8 ай бұрын
Hello. Here are some resources that may help your son and your family. -Global Pediatric MDS Imitative, www.pediatricmds.org/ -Contact Inga Hofmann via the groups Facebook page, facebook.com/GlobalPediatricMDSInitiative/ or email her at [email protected]. -There are some clinical trials at NIH that he may qualify to participate. Please email Jennifer Farren at NIH [email protected]. Hola. Aquí encontrará algunos recursos que pueden ayudar a su hijo y a su familia. -Imitativo global de MDS pediátrico, www.pediatricmds.org/ -Comuníquese con Inga Hofmann a través de la página de Facebook del grupo, facebook.com/GlobalPediatricMDSInitiative/ o envíele un correo electrónico a [email protected]. -Hay algunos ensayos clínicos en los NIH para los que puede calificar para participar. Envíe un correo electrónico a Jennifer Farren a NIH [email protected].
@AAMDSIF 8 ай бұрын
Hola. Aquí encontrará algunos recursos que pueden ayudar a su hijo y a su familia. -Imitativo global de MDS pediátrico, www.pediatricmds.org/ -Comuníquese con Inga Hofmann a través de la página de Facebook del grupo, facebook.com/GlobalPediatricMDSInitiative/ o envíele un correo electrónico a [email protected]. -Hay algunos ensayos clínicos en los NIH para los que puede calificar para participar. Envíe un correo electrónico a Jennifer Farren a NIH [email protected].