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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
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
SCD and Keto
Hi, has anyone tried keto diet to help with sickle cell crisis? My niece has SCD has been in the hospital for months. She had to Withdraw from college also. The pain is relentless this time. I’m just thinking outside the box. She is on so much pain meds she can barely keep her eyes open. This can’t
Hi, has anyone tried keto diet to help with sickle cell crisis? My niece has SCD has been in the hospital for months. She had to Withdraw from college also. The pain is relentless this time. I’m just thinking outside the box. She is on so much pain meds she can barely keep her eyes open. This can’t
Suzyannb
in
Sickle Cell Society
6 years ago
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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
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
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
GCA and black outs?
Hi I'm new to this forum. Dx with pmr April this year. CRP 106. 20mg prednisolone. Worked well so slowly down to 7mg by beginning of November when all symptoms came back within days. then fell over but thought nothing of it. Following week started to feel really unwell. Husband found me unconscious
Hi I'm new to this forum. Dx with pmr April this year. CRP 106. 20mg prednisolone. Worked well so slowly down to 7mg by beginning of November when all symptoms came back within days. then fell over but thought nothing of it. Following week started to feel really unwell. Husband found me unconscious
Devonspinner
in
PMRGCAuk
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
Is hair loss a given?
Hi all - I know that hair loss/thinning is listed as a possible side effect of taking hydroxyurea. I immediately latched on to the word “possible”, in the hope that it also means loads of us on the drug will not lose hair. My haemo has many young patients who have to take hydroxy forever for sickle cell
Hi all - I know that hair loss/thinning is listed as a possible side effect of taking hydroxyurea. I immediately latched on to the word “possible”, in the hope that it also means loads of us on the drug will not lose hair. My haemo has many young patients who have to take hydroxy forever for sickle cell
WileyFrench
in
MPN Voice
6 years ago
SickleCellNewsWeek
I would gladly marry a man with sickle cell anaemia! – former Most Beautiful Girl in Nigeria (MBGN) http://bit.ly/2OColcx Swedish biotech company, Modus Therapeutics announces FDA Acceptance of Sevuparin for treatment of SCD http://bit.ly/2RLm8xl I long diagnosed myself with sickle cell anaemia,
I would gladly marry a man with sickle cell anaemia! – former Most Beautiful Girl in Nigeria (MBGN) http://bit.ly/2OColcx Swedish biotech company, Modus Therapeutics announces FDA Acceptance of Sevuparin for treatment of SCD http://bit.ly/2RLm8xl I long diagnosed myself with sickle cell anaemia,
sicklecellnews
in
Sickle Cell Society
6 years ago
It's back.
First, the good news: The results of my 1 year post surgery colonoscopy show no colon cancer. Unfortunately, the results of my 1 year post surgery contrasting CT scan show that the ovarian cancer has recurred. I’m somewhere between relieved and sad because now the waiting is over, but I can't find
First, the good news: The results of my 1 year post surgery colonoscopy show no colon cancer. Unfortunately, the results of my 1 year post surgery contrasting CT scan show that the ovarian cancer has recurred. I’m somewhere between relieved and sad because now the waiting is over, but I can't find
CynD
in
My Ovacome
6 years ago
Sickle Cell NewsWeek
SickleCellNewsWeek He did not pay a cent for the bone marrow transplant that cured him of SCD. Anyone can access the opportunity! http://bit.ly/2R1wmda Lawyer, actress, song-writer, singer, broadcaster Tosin Abisona Bucknor (1981-2018) on passion for SCD awareness – ‘I believed I wouldn’t live to 21
SickleCellNewsWeek He did not pay a cent for the bone marrow transplant that cured him of SCD. Anyone can access the opportunity! http://bit.ly/2R1wmda Lawyer, actress, song-writer, singer, broadcaster Tosin Abisona Bucknor (1981-2018) on passion for SCD awareness – ‘I believed I wouldn’t live to 21
sicklecellnews
in
Sickle Cell Society
6 years ago
Sickle Cell News Week
SickleCellNewsWeek Cecilia Tiwaah Abrefa recalls waking up one day to find she could not lift her limbs or sit unaided – it took six years to get back to (a semblance of) normal http://bit.ly/2KasXpR High altitudes are proven crises-triggers. Yet Kevin is adamant he wants to be a FIGHTER PILOT. He
SickleCellNewsWeek Cecilia Tiwaah Abrefa recalls waking up one day to find she could not lift her limbs or sit unaided – it took six years to get back to (a semblance of) normal http://bit.ly/2KasXpR High altitudes are proven crises-triggers. Yet Kevin is adamant he wants to be a FIGHTER PILOT. He
sicklecellnews
in
Sickle Cell Society
6 years ago
SICKLE CELL NEWSWEEK
SICKLECELLNEWSWEEK MAYDAY: Nigerian teacher/author seeks support to undertake last ditch bone marrow transplant in India http://bit.ly/2RxxyEN Renowned Bone Marrow Transplant Rahul Bhargava launches series to answer all questions on BMT http://bit.ly/2DkMhQn Mother of twins, Mariam Kay recalls
SICKLECELLNEWSWEEK MAYDAY: Nigerian teacher/author seeks support to undertake last ditch bone marrow transplant in India http://bit.ly/2RxxyEN Renowned Bone Marrow Transplant Rahul Bhargava launches series to answer all questions on BMT http://bit.ly/2DkMhQn Mother of twins, Mariam Kay recalls
sicklecellnews
in
Sickle Cell Society
6 years ago
Grateful for any advice on taking a Vit B Complex plus a good mumtivitamin
I’m currently taking Thorne Basic B Complex but also after advice on here looking for a decent A-Z multivitamin. If anyone versed in this has a moment to take a look at the multivitamin and advise if ok to take with the B Comolex. Thank you lovely people in advance 😊 Ok it won’t let me load the pics
I’m currently taking Thorne Basic B Complex but also after advice on here looking for a decent A-Z multivitamin. If anyone versed in this has a moment to take a look at the multivitamin and advise if ok to take with the B Comolex. Thank you lovely people in advance 😊 Ok it won’t let me load the pics
Mandymoos8
in
Pernicious Anaemia Society
6 years ago
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