My grandfather, mother, and myself have been diagnosed with HHT and have been for a while now. I am so thankful that we were diagnosed so early, and that we are currently able to manage our bleeding. Great video. My family tries to educate as many people as we can about the disease.
I'm from the Uk .I was diagnosed about 7 years ago .I grow up not knowing I had hht .My mother passed it to myself and 1 sister and a brother. I gave it to 2 children .1 of my grandchildren has it. I get awful nose bleeds and now I have been told I have a AVM in my liver. People have this disease all around the world, not just America.
Yes, we are aware that 1.2 million people globally have HHT. We are an International Patient Advocacy organization that is funding research for people with HHT all around the world.
I have HHT inherited from my Mother. I had a huge AVM of the spine as a child. I am now in a wheelchair after having had surgery to remove that AVM. Unfortunately I have been unable to be screened for the presence of any other or newer AVM's anywhere in my body because insurance companies say it's "a fishing expedition" and something must go wrong first before they will cover any diagnostic tests. Welcome to the USA.
@@bt9124 It's just how the USA's for profit insurance set up works. This is why so many are vocal advocates for Universal Health Care. I appreciate your comment.
Sorry that is your experience. I had severe nose bleeds initially and assumed it was a surgical complication, then asked about HHT, since they always ran in the family. Then I went to an HHT center to get a work-up. Insurance never questioned any part of the work up. It just took one member of the extended family to get a positive genetic test. Since, no one in my family tree has had any trouble getting worked up, since I fell on the sword for all of us. They have used my test results if proof is ever required for any "fishing expeditions". We are spread across 3 different states as well. No problems with insurance. We started all getting worked up 10 years ago.@@RachelStormborn
Hello sir! Iam suffering bleeding from nose since childhood when I become younger not regular bleeding but if I eat hot items or cold items I don't know it start bleeding from nose sometimes by coughing also got bleeding.. And since many years my weight is constant 45-46kg, I am suffering with clubbing fingers in hand and legs.. But I not faced any health issue. I started searching reason for my clubbing I found a doctor Sharath internal cordiologiest he said there was multiple avms in my lungs it is not possible to do treat them all but he did coiling to 3 avms which might Are serious at my age of 30. After I got married at age of 33 now Iam 41 with 3kids 2girls 1boy.. I not faced any problem.. On covid also I not faced any health problem but because of covid lockdown I faced financial jobless problem for almost 2 years in between this period my kidneys are failed now Iam on dialysis.. Weekly once.. Still Iam very active.. But doctors are asking me to get genetic testing hgt, isler weber render test... My request is there any treatment for my issue?? I couldn't effort money for genetic testing.. I am fear that is it effect to my innocent kids.. Please help me in easy way sir... Thank you
I'm 45 and I've always known I had it, because my mother was diagnosed. I had an AVM on my lip rupture a few years ago and it left a big, blue spot on my lip. I had it removed yesterday at my Veterans Affairs hospital. The doctor actually asked if blood makes me squeamish. All I could do was laugh because of the daily nosebleeds.
My dad, me and my daughter has it. I have really bad nosebleeds. My dad is anaemic as he has a small bleed in his intestine. We're being treated but it's still pretty bad.
I'm from an HHT family. My great grandfather had it, my grandfather has it, my great uncle had it, my dad and both his siblings have it, and my baby brother has it. My sister and I surprisingly don't have it (though I have a separate nosebleed problem that I thought was from HHT until I tested negative for it), but that doesn't mean that it doesn't affect our lives. My great uncle just died due to complications from HHT, and a few months ago my dad nearly died. Now, my brother is going to be going to a clinic to get tested for AVMs, and hopefully the rest of my family will follow. I'm so grateful for everything that these doctors do to aid and treat patients with HHT. It's such a scary disorder, especially when you're experiencing it's effects personally, whether because you have it or because your family has it, but it's comforting to know that we're not alone, that there are others who have it and others who know what it is. So thank you so so much, for making these videos and for putting forth effort to help those who have HHT.
I am sorry to hear how impacted you and your family are with HHT. Do you have a copy of our new "Comprehensive Guide to Managing Your HHT?" It houses our new HHT International Guidelines FactSheets and corresponding Checklists. If you would like a copy, please send a request to hhtinfo@curehht.org.
Can older brain lesions cause calcifications? I have headaches, ear bleeds, nose bleeds, my eyes and throat are bloodshot, purple fingernails, tiny red spots on my arms and chest and I've evidence of severe but not routine bleeding of the intestines (very dark soft stool, significant pain of my lower left abdomen usually precedes this symptom). My mother has a purple spot on her lip and has noticed a new large bright red spot on her stomach that she had examined by a doctor recently. She has also recently told me that she has started bleeding from her mouth. Though I attributed that to her recent visit to the dentist where she had surgery to remove bone spurs in her mouth. My father will not talk about anything health related and doesn't have any obvious outward signs related to HHT. Previously I thought I had problems with my vision so I saw an optometrist who cleared me of everything including colorblindness. I have severe headaches which are not migraines and they are not new to me but the incredible surge in severity encouraged me to get a CT scan thinking that my brain would be the cause of my vision issues. The two pinky tip sized calcifications are considered "normal" despite the fact that my headaches are becoming more severe and more frequent with other issues like weakness in my right arm as well as numbness and even complete immobility of that limb (rarely other limbs), I've nearly blacked-out twice in 6 months (never fainted before), suffer from slurred speech for a little over a year now, have minor drooling, I'm am less able to form easily understandable sentences (text or speech) and I was only 24 when I had the scan (almost one year ago now). I thought my neurological issues could even be caused by being struck by lightning a few years ago, but doctors just go blank when I ask if that had anything to do with my neurological symptoms. The internet isn't very helpful here either basically saying I'm S-O-L if that's the root of those problems and it will only get worse as time progresses, but it doesn't explain the bleeding. I thought the changes in my skin tone and hair loss were caused by blood poisoning a serious infection and my mother thought it could be a thyroid condition. So I had a blood test which indicated elevated sodium. About a month later after going on a low sodium diet I had another blood test which was completely normal. I even thought I could have testicular cancer that metastasized into other forms of cancer and spread all over my body and into my brain owing to my enlarged scrotum and the fact that it's been in extreme pain on and off the 14+ years. I had an ultrasound which confirms I have two large cysts one for each testicle, but no cancer, so I have to just deal with that until I have the money to cut them out, at least I know it's unrelated. My issues persisted and all the doctors where I live have since written me off... With a huge amount of debt due to the cost of the tests... I lost my job in December of last year after my workplace decided I missed too many days. I didn't get any better while I was at home ruling out my parents hypothesis that I just hated my job. Now that I have two jobs it feels like I will lose them again and my parents are back in their pattern of thinking I hate my jobs. I keep calling out if I wake up not being able to use my arm. Or because my troat is irritated after waking which I think is caused by nosebleeds draining into my troat while I sleep; which has caused me to wake up in the middle of the night and cough severely for a few minutes, but I've not noticed any bloody discharge from my mouth yet. One of my managers at one of my new jobs is already starting to come to the conclusion my parents have: "I don't care about work." I have a strange posture when standing or walking which many strangers, co-workers, friends and family have commented about. I've also noticed darkening of the second knuckles of all my fingers, excluding the thumbs each of which have a single dark vein connecting the digit to my hand. On the tops of my feet I have also noticed a large red spot that appears new to me and have suffered obvious bleeding under the skin of a single toe (which has healed) despite not suffering any injury. Despite all of this I'm still labeled as being lazy by my direct family and crazy by doctors. I don't just go around to people in person and discus this either it's embarrassing even though that is essentially what I'm doing here. I just want answers now and I don't care how I get them as long as I can finally get the right one.
is it expensive to get screening done and should I go to a hht center or just with my local hospital here? ive had it since 16 and didn't realize I had to get tested my dad had it as do my cousins.
Hi Lorrie. Yes, this is a highly treatable disease with the proper management. Do you have a copy of our "Comprehensive Guide to Managing Your HHT." I would be happy to send you a copy. Please send a request to hhtinfo@curehht.org.
I was just diagnosed at 46, I have had aMRI of my brain and I have some lesions. We are going over treatment plans and I believe we are going to use radiation to target the lesions in the brain. I have to have scans of my lungs and liver to see if they are effected as well as my intestinal track. My children are being tested now but they do not think my daughter (age 20) has it but unfortunately we believe my son (age 22) does. I am so glad that he was diagnosed at his age and we can get him on a treatment plan. I had never heard of this disorder until now but over the years I have had many symptoms but the doctor’s never put it all together.
I have nosebleedshht form my mother. l have a big brother died for nosebleeds hht. my also l have nosebleedshht everyday day so what can l do for stopping nosebleeds hht. thanks. Anthony
Hi Katharine. Would you like a copy of our "Comprehensive Guide to Managing Your HHT?" This new resource may have information to help you better understand this disease. You can request a copy at hhtinfor@curehht.org. I also recommend ordering a copy of Dr. Sara Palmer's book "Living with HHT." This is available online in our store at www.curehht.org.
In honor of HHT Awareness Month, LifeShare Blood Centers is having special awareness blood drives. Find out how you can help those with HHT by giving blood at your nearest HHT blood drive. Visit our website for details.
My grandfather, mother, and myself have been diagnosed with HHT and have been for a while now. I am so thankful that we were diagnosed so early, and that we are currently able to manage our bleeding. Great video. My family tries to educate as many people as we can about the disease.
I think it’s more common than they say. It’s fing horrible.
My aunt Jordan passed away one year ago today on june 26, 2014. Now it's June 26, 2015. Please have a moment of silence for her today
From a nose bleed?
My cousin just passed a few days ago from complications of it … she fought a long battle with it all her life … she was 44 ❤
I'm from the Uk .I was diagnosed about 7 years ago .I grow up not knowing I had hht .My mother passed it to myself and 1 sister and a brother. I gave it to 2 children .1 of my grandchildren has it. I get awful nose bleeds and now I have been told I have a AVM in my liver. People have this disease all around the world, not just America.
Yes, we are aware that 1.2 million people globally have HHT. We are an International Patient Advocacy organization that is funding research for people with HHT all around the world.
@@HHTFoundation Thank you !
I am from Poland. My grandfather and my father had it. And I am diagnosed.
I have HHT inherited from my Mother. I had a huge AVM of the spine as a child. I am now in a wheelchair after having had surgery to remove that AVM. Unfortunately I have been unable to be screened for the presence of any other or newer AVM's anywhere in my body because insurance companies say it's "a fishing expedition" and something must go wrong first before they will cover any diagnostic tests. Welcome to the USA.
Something has already gone wrong! Get a 2nd opinion! This is outrageous.
@@bt9124 It's just how the USA's for profit insurance set up works. This is why so many are vocal advocates for Universal Health Care. I appreciate your comment.
The people of USA need to push their government for universal healthcare. It should NOT be a for-profit business!! What a twisted perspective 😡
@@wyzolma99 Agreed.
Sorry that is your experience. I had severe nose bleeds initially and assumed it was a surgical complication, then asked about HHT, since they always ran in the family. Then I went to an HHT center to get a work-up. Insurance never questioned any part of the work up. It just took one member of the extended family to get a positive genetic test. Since, no one in my family tree has had any trouble getting worked up, since I fell on the sword for all of us. They have used my test results if proof is ever required for any "fishing expeditions". We are spread across 3 different states as well. No problems with insurance. We started all getting worked up 10 years ago.@@RachelStormborn
AVASTIN has made a HUGE difference in my Family's life. This drug truly changed HHT
please provide information to me about this drug. thank you
Hello sir! Iam suffering bleeding from nose since childhood when I become younger not regular bleeding but if I eat hot items or cold items I don't know it start bleeding from nose sometimes by coughing also got bleeding.. And since many years my weight is constant 45-46kg, I am suffering with clubbing fingers in hand and legs.. But I not faced any health issue. I started searching reason for my clubbing I found a doctor Sharath internal cordiologiest he said there was multiple avms in my lungs it is not possible to do treat them all but he did coiling to 3 avms which might
Are serious at my age of 30. After I got married at age of 33 now Iam 41 with 3kids 2girls 1boy.. I not faced any problem.. On covid also I not faced any health problem but because of covid lockdown I faced financial jobless problem for almost 2 years in between this period my kidneys are failed now Iam on dialysis.. Weekly once.. Still Iam very active.. But doctors are asking me to get genetic testing hgt, isler weber render test... My request is there any treatment for my issue?? I couldn't effort money for genetic testing.. I am fear that is it effect to my innocent kids.. Please help me in easy way sir... Thank you
I'm 45 and I've always known I had it, because my mother was diagnosed. I had an AVM on my lip rupture a few years ago and it left a big, blue spot on my lip. I had it removed yesterday at my Veterans Affairs hospital. The doctor actually asked if blood makes me squeamish. All I could do was laugh because of the daily nosebleeds.
Thank you HHT foundation.
Thanks for the great video. I hope to see more video's about HHT. I will spread the word!
My dad, me and my daughter has it. I have really bad nosebleeds. My dad is anaemic as he has a small bleed in his intestine. We're being treated but it's still pretty bad.
I'm from an HHT family. My great grandfather had it, my grandfather has it, my great uncle had it, my dad and both his siblings have it, and my baby brother has it. My sister and I surprisingly don't have it (though I have a separate nosebleed problem that I thought was from HHT until I tested negative for it), but that doesn't mean that it doesn't affect our lives. My great uncle just died due to complications from HHT, and a few months ago my dad nearly died. Now, my brother is going to be going to a clinic to get tested for AVMs, and hopefully the rest of my family will follow. I'm so grateful for everything that these doctors do to aid and treat patients with HHT. It's such a scary disorder, especially when you're experiencing it's effects personally, whether because you have it or because your family has it, but it's comforting to know that we're not alone, that there are others who have it and others who know what it is. So thank you so so much, for making these videos and for putting forth effort to help those who have HHT.
I am sorry to hear how impacted you and your family are with HHT. Do you have a copy of our new "Comprehensive Guide to Managing Your HHT?" It houses our new HHT International Guidelines FactSheets and corresponding Checklists. If you would like a copy, please send a request to hhtinfo@curehht.org.
Literally terrified bc my dad has it and I’m showing symptoms
I hear it's highly treatable. That's the good part. Take care!
Catherine: Woooow, Nice to say...
Can older brain lesions cause calcifications?
I have headaches, ear bleeds, nose bleeds, my eyes and throat are bloodshot, purple fingernails, tiny red spots on my arms and chest and I've evidence of severe but not routine bleeding of the intestines (very dark soft stool, significant pain of my lower left abdomen usually precedes this symptom).
My mother has a purple spot on her lip and has noticed a new large bright red spot on her stomach that she had examined by a doctor recently. She has also recently told me that she has started bleeding from her mouth. Though I attributed that to her recent visit to the dentist where she had surgery to remove bone spurs in her mouth.
My father will not talk about anything health related and doesn't have any obvious outward signs related to HHT.
Previously I thought I had problems with my vision so I saw an optometrist who cleared me of everything including colorblindness. I have severe headaches which are not migraines and they are not new to me but the incredible surge in severity encouraged me to get a CT scan thinking that my brain would be the cause of my vision issues. The two pinky tip sized calcifications are considered "normal" despite the fact that my headaches are becoming more severe and more frequent with other issues like weakness in my right arm as well as numbness and even complete immobility of that limb (rarely other limbs), I've nearly blacked-out twice in 6 months (never fainted before), suffer from slurred speech for a little over a year now, have minor drooling, I'm am less able to form easily understandable sentences (text or speech) and I was only 24 when I had the scan (almost one year ago now).
I thought my neurological issues could even be caused by being struck by lightning a few years ago, but doctors just go blank when I ask if that had anything to do with my neurological symptoms. The internet isn't very helpful here either basically saying I'm S-O-L if that's the root of those problems and it will only get worse as time progresses, but it doesn't explain the bleeding.
I thought the changes in my skin tone and hair loss were caused by blood poisoning a serious infection and my mother thought it could be a thyroid condition. So I had a blood test which indicated elevated sodium. About a month later after going on a low sodium diet I had another blood test which was completely normal.
I even thought I could have testicular cancer that metastasized into other forms of cancer and spread all over my body and into my brain owing to my enlarged scrotum and the fact that it's been in extreme pain on and off the 14+ years. I had an ultrasound which confirms I have two large cysts one for each testicle, but no cancer, so I have to just deal with that until I have the money to cut them out, at least I know it's unrelated.
My issues persisted and all the doctors where I live have since written me off... With a huge amount of debt due to the cost of the tests... I lost my job in December of last year after my workplace decided I missed too many days. I didn't get any better while I was at home ruling out my parents hypothesis that I just hated my job. Now that I have two jobs it feels like I will lose them again and my parents are back in their pattern of thinking I hate my jobs. I keep calling out if I wake up not being able to use my arm. Or because my troat is irritated after waking which I think is caused by nosebleeds draining into my troat while I sleep; which has caused me to wake up in the middle of the night and cough severely for a few minutes, but I've not noticed any bloody discharge from my mouth yet. One of my managers at one of my new jobs is already starting to come to the conclusion my parents have: "I don't care about work."
I have a strange posture when standing or walking which many strangers, co-workers, friends and family have commented about. I've also noticed darkening of the second knuckles of all my fingers, excluding the thumbs each of which have a single dark vein connecting the digit to my hand. On the tops of my feet I have also noticed a large red spot that appears new to me and have suffered obvious bleeding under the skin of a single toe (which has healed) despite not suffering any injury.
Despite all of this I'm still labeled as being lazy by my direct family and crazy by doctors.
I don't just go around to people in person and discus this either it's embarrassing even though that is essentially what I'm doing here. I just want answers now and I don't care how I get them as long as I can finally get the right one.
is it expensive to get screening done and should I go to a hht center or just with my local hospital here? ive had it since 16 and didn't realize I had to get tested my dad had it as do my cousins.
Hi Lorrie. Yes, this is a highly treatable disease with the proper management. Do you have a copy of our "Comprehensive Guide to Managing Your HHT." I would be happy to send you a copy. Please send a request to hhtinfo@curehht.org.
I was just diagnosed at 46, I have had aMRI of my brain and I have some lesions. We are going over treatment plans and I believe we are going to use radiation to target the lesions in the brain. I have to have scans of my lungs and liver to see if they are effected as well as my intestinal track. My children are being tested now but they do not think my daughter (age 20) has it but unfortunately we believe my son (age 22) does. I am so glad that he was diagnosed at his age and we can get him on a treatment plan. I had never heard of this disorder until now but over the years I have had many symptoms but the doctor’s never put it all together.
What symptoms did you have to cause the doctor to look into HHT?
I have nosebleedshht form my mother. l have a big brother died for nosebleeds hht.
my also l have nosebleedshht everyday day so what can l do for stopping nosebleeds hht. thanks. Anthony
When I was twelve I got diagnosed with it an I'm getting surgery soon
I really don't know about it
Hi Katharine. Would you like a copy of our "Comprehensive Guide to Managing Your HHT?" This new resource may have information to help you better understand this disease. You can request a copy at hhtinfor@curehht.org. I also recommend ordering a copy of Dr. Sara Palmer's book "Living with HHT." This is available online in our store at www.curehht.org.
In honor of HHT Awareness Month, LifeShare Blood Centers is having special awareness blood drives. Find out how you can help those with HHT by giving blood at your nearest HHT blood drive. Visit our website for details.
Any military members with HHT ,,,is it disqualifying for a 17 year old.
Please contact Cure HHT by emailing us at hhtinfo@curehht.org
@@HHTFoundation My son received a medical waiver to enlist into the National Guard....Dr. Terratola @ HHT Center in Philadelphia, Pa.
Wow i think i have cancer and HHT
3335 Schroeder Gateway
HHT plagues my family, horrid thing