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SICKLE CELL NEWSWEEK
FATIMAH had a stroke at the age of 7. She recovered 100% and graduates May 2019 with a degree in Public Finance http://bit.ly/2FAO2KD Zandra Chidinma Nwogu’s first pain crises in eight years - ‘Water Marathon Therapy’ to the rescueh ttp://bit.ly/2HvAi5k Folks with SCD can only TAKE but not GIVE blood
FATIMAH had a stroke at the age of 7. She recovered 100% and graduates May 2019 with a degree in Public Finance http://bit.ly/2FAO2KD Zandra Chidinma Nwogu’s first pain crises in eight years - ‘Water Marathon Therapy’ to the rescueh ttp://bit.ly/2HvAi5k Folks with SCD can only TAKE but not GIVE blood
sicklecellnews
in
Sickle Cell Society
5 years ago
Hey There
Hi everyone this is just a post of me introducing myself, I'm not sure how close of a community you guys are but it's nice to be a part of something where people can really relate. My name is Kelsey I was born and diagnosed with Sickle Cell Anemia and I'm just trying to keep my shit together lol.
Hi everyone this is just a post of me introducing myself, I'm not sure how close of a community you guys are but it's nice to be a part of something where people can really relate. My name is Kelsey I was born and diagnosed with Sickle Cell Anemia and I'm just trying to keep my shit together lol.
sunshinee
in
Sickle Cell Society
5 years ago
Sickle Cell News
Telemedicine Mobihealth (UK) is set to revolutionize healthcare delivery for SCD and other health conditions in Africa ‘But you don’t look sick!’ Looking OK is worlds apart from Feeling Ok – why people with SCD need better understanding and acceptance, by Lady Anne Welsh, former Chairperson, Sickle Cell
Telemedicine Mobihealth (UK) is set to revolutionize healthcare delivery for SCD and other health conditions in Africa ‘But you don’t look sick!’ Looking OK is worlds apart from Feeling Ok – why people with SCD need better understanding and acceptance, by Lady Anne Welsh, former Chairperson, Sickle Cell
sicklecellnews
in
Sickle Cell Society
6 years ago
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Private B12 injections in London please?
Hello, Does anyone know of a private GP in the London area or Kent who will give B12 injections please? I have had my loading dose of 6 just over 2 weeks ago, some symptoms went away but dizzyness and strange tiredness after walking for more 10 minutes were still there. I told this to my GP. But now
Hello, Does anyone know of a private GP in the London area or Kent who will give B12 injections please? I have had my loading dose of 6 just over 2 weeks ago, some symptoms went away but dizzyness and strange tiredness after walking for more 10 minutes were still there. I told this to my GP. But now
GastritisB12
in
Pernicious Anaemia Society
6 years ago
Cutaneous Vasculitis
Hi all Back in early 2015 I had the most awful rash and raised itchy lumps over the lower part of my legs. I went to my GP who suggested treating the whole family for Scabies. After many tests and appointments later and biopsies they confirmed Cutaneous Vasculitis. Back in 2018 from July to December
Hi all Back in early 2015 I had the most awful rash and raised itchy lumps over the lower part of my legs. I went to my GP who suggested treating the whole family for Scabies. After many tests and appointments later and biopsies they confirmed Cutaneous Vasculitis. Back in 2018 from July to December
lou1972
in
Vasculitis UK
5 years ago
New in fight with ALD
Hello everyone, My name is Ramona from Romania,my son was diagnosed recently with X-ALD ,he has 8 years old,we didnt knew anything about this disease till now,we still dont know much so thats why i came here to ask,read,share informations with you.He is not now eligible for a stem cell transplant or
Hello everyone, My name is Ramona from Romania,my son was diagnosed recently with X-ALD ,he has 8 years old,we didnt knew anything about this disease till now,we still dont know much so thats why i came here to ask,read,share informations with you.He is not now eligible for a stem cell transplant or
MonaStoica
in
Leukodystrophy Support
6 years ago
Job interview - dealing with embarrassing sweats
Hi everyone My tapering journey has been going well and the side effects of the steroids and the withdrawal on each reduction are becoming much less and bearable EXCEPT I suffer from red hot flushes to the face and terrible head sweats. I have noticed that these occur spontaneously but they are definitely
Hi everyone My tapering journey has been going well and the side effects of the steroids and the withdrawal on each reduction are becoming much less and bearable EXCEPT I suffer from red hot flushes to the face and terrible head sweats. I have noticed that these occur spontaneously but they are definitely
EscapedtoWales
in
PMRGCAuk
6 years ago
Bone Marrow Transplant Failed
In early 2017, I took a big bet. I suspended normal cancer treatments, in order to preserve my eligibility for a very novel phase 1 clinical trial. Initially, I didn't qualify, but they agreed to modify the trial to make me eligible. That process took a while, so we didn't get started until late 2017
In early 2017, I took a big bet. I suspended normal cancer treatments, in order to preserve my eligibility for a very novel phase 1 clinical trial. Initially, I didn't qualify, but they agreed to modify the trial to make me eligible. That process took a while, so we didn't get started until late 2017
Beauxman
in
Advanced Prostate Cancer
6 years ago
Dr Manos Nikolousis discusses new drugs now available to treat Acute Myeloid Leukaemia (AML)
AML treatment is moving from being a standard treatment to a personalised treatment. Dr Manos Nikolousis, Clinical Director at Haematology / Stem cell transplantation Heart of England NHS Trust talks about these advancements. https://youtu.be/LUwE1xCTXNk
AML treatment is moving from being a standard treatment to a personalised treatment. Dr Manos Nikolousis, Clinical Director at Haematology / Stem cell transplantation Heart of England NHS Trust talks about these advancements. https://youtu.be/LUwE1xCTXNk
HAIRBEAR_UK
in
Leukaemia Support
6 years ago
Standards of Care as defined by UMN doctors
Bloodwork to check for adrenal insufficiency should be done at 4 months and repeated every six to detect AI early. It is easily treated with oral cortisol if need be. The first MRI should be done between 12 and 18 months to get a baseline reading and then repeated at age 3. From then on it too needs
Bloodwork to check for adrenal insufficiency should be done at 4 months and repeated every six to detect AI early. It is easily treated with oral cortisol if need be. The first MRI should be done between 12 and 18 months to get a baseline reading and then repeated at age 3. From then on it too needs
fightald
Administrator
in
Parents of ALD Newborns
6 years ago
Has anyone had a bone marrow transplant who has PV?
My husband has PV he was diagnosed in 2012. He's had a scan and his spleen has doubled in size. He's had to have a bone marrow biopsy. We have got the biopsy results back today. His bone marrow has a lot of scar fibrosis so he is referring him to the RVI Newcastle for a bone marrow transplant. We were
My husband has PV he was diagnosed in 2012. He's had a scan and his spleen has doubled in size. He's had to have a bone marrow biopsy. We have got the biopsy results back today. His bone marrow has a lot of scar fibrosis so he is referring him to the RVI Newcastle for a bone marrow transplant. We were
tracey13
in
MPN Voice
6 years ago
two kids diagnosed with ALD
I have two son's who have been diagnosed with ALD. One of them is 8 year old and the other is 3 year old. Both don't show any physical symptoms of ALD as such. The only symptom the elder one has is lack of concentration and forgetfulness. Does this mean my elder son is symptomatic? I am not able to conclude
I have two son's who have been diagnosed with ALD. One of them is 8 year old and the other is 3 year old. Both don't show any physical symptoms of ALD as such. The only symptom the elder one has is lack of concentration and forgetfulness. Does this mean my elder son is symptomatic? I am not able to conclude
aadilmadarveet
in
Leukodystrophy Support
6 years ago
Sickle Cell News Week
SICKLECELLNEWSWEEk He will probably be 72 years old before he has another major sickle cell crises … a day in the life of a lab scientist http://bit.ly/2EItuzp Nigeria 2019 – Presidential Candidate Hooks Up With SCD Group on Whatsapp – says Sickle Cell not a barrier to a purposeful life http://bit.ly
SICKLECELLNEWSWEEk He will probably be 72 years old before he has another major sickle cell crises … a day in the life of a lab scientist http://bit.ly/2EItuzp Nigeria 2019 – Presidential Candidate Hooks Up With SCD Group on Whatsapp – says Sickle Cell not a barrier to a purposeful life http://bit.ly
sicklecellnews
in
Sickle Cell Society
6 years ago
Identify the carrier.
How to diagnose if I am the carrier or my wife is. The doctors just assume that it's my wife. The reason why this is important is because I am getting a bone marrow transplant done for my elder son and I 'll be the donor for him. So trying to verify with all the sources I have as to what I am doing is
How to diagnose if I am the carrier or my wife is. The doctors just assume that it's my wife. The reason why this is important is because I am getting a bone marrow transplant done for my elder son and I 'll be the donor for him. So trying to verify with all the sources I have as to what I am doing is
aadilmadarveet
in
Parents of ALD Newborns
6 years ago
Lukiemia and High white blood count
Extremely fatigued, tired and sleeping all the time. Weak and hard to walk without loosing breath. Loss of appetite. And eating very little. White blood count really high but abs neutripils are very low. Red blood a bit low. He has 40 Percent blast and they have been treating him. So far he's not showing
Extremely fatigued, tired and sleeping all the time. Weak and hard to walk without loosing breath. Loss of appetite. And eating very little. White blood count really high but abs neutripils are very low. Red blood a bit low. He has 40 Percent blast and they have been treating him. So far he's not showing
ConcernedSpouse2012
in
CLL Support
6 years ago
Therapy y Sickle Cell
Hi everyone. I am 41 years old and I have sickle cell anemia. I would like to share something which is the Bemer therapy that is helping my blood to flow better and that relieves the pain in my shoulders as I have had several infarcts in both of my shoulders. I continue with my medications every day
Hi everyone. I am 41 years old and I have sickle cell anemia. I would like to share something which is the Bemer therapy that is helping my blood to flow better and that relieves the pain in my shoulders as I have had several infarcts in both of my shoulders. I continue with my medications every day
Sabata
in
Sickle Cell Society
6 years ago
Any help in Florida?
Hey y'all, seems like being here feels like I'm doomed😢 I really want A stem cell transplant. How would I get it? How do I sign up? I Really wish I lived in the U.K . I've read alot of stories here. Seens like they help you more. Someone plz help me.
Hey y'all, seems like being here feels like I'm doomed😢 I really want A stem cell transplant. How would I get it? How do I sign up? I Really wish I lived in the U.K . I've read alot of stories here. Seens like they help you more. Someone plz help me.
Susanissufferingtoo
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
SICKLE CELL NEWSWEEK
Young medical graduate tells Paediatrics Professor, YOU KNOW NOTHING ABOUT SICKLE CELL!!! http://bit.ly/2QAqM59 Seven-year-old diagnosed with spinal cord stroke – long road to recovery http://bit.ly/2RZTJnL UK-based Richard Coker Foundation takes sickle cell awareness seminar to Girls’ College
Young medical graduate tells Paediatrics Professor, YOU KNOW NOTHING ABOUT SICKLE CELL!!! http://bit.ly/2QAqM59 Seven-year-old diagnosed with spinal cord stroke – long road to recovery http://bit.ly/2RZTJnL UK-based Richard Coker Foundation takes sickle cell awareness seminar to Girls’ College
sicklecellnews
in
Sickle Cell Society
6 years ago
What a year - and some good news to end it
Hi all, Thought I would share some positive news from me after a pretty crazy year - if nothing else to get my head around it. Back in January I was diagnosed with ET, then MF (despite having no fibrosis but I didn’t realise this made no sense at the time) and then imminent AML (despite having no
Hi all, Thought I would share some positive news from me after a pretty crazy year - if nothing else to get my head around it. Back in January I was diagnosed with ET, then MF (despite having no fibrosis but I didn’t realise this made no sense at the time) and then imminent AML (despite having no
Timjonze
in
MPN Voice
6 years ago
SICKLECELLNEWSWEEK
Beverley Francis-Gibson, SCDAA President/CEO writes for SICKLE CELL NEWS – my mandate is to shed light on SCD and break down the barriers of stigma http://bit.ly/2zp7zsf Anne Welsh, former Chairperson, Sickle Cell Society (UK) writes for SICKLE CELL NEWS – you look OK to an observer, but FEEL otherwise
Beverley Francis-Gibson, SCDAA President/CEO writes for SICKLE CELL NEWS – my mandate is to shed light on SCD and break down the barriers of stigma http://bit.ly/2zp7zsf Anne Welsh, former Chairperson, Sickle Cell Society (UK) writes for SICKLE CELL NEWS – you look OK to an observer, but FEEL otherwise
sicklecellnews
in
Sickle Cell Society
6 years ago
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