A few years ago when I was in high school in grade eleven, I had a stroke in my cerebellum which caused me to be unable to balance or co-ordinate basic movements. A couple years later, after many visits to neurologists and many other hospital proddings and tests I was finally diagnosed with HHT in my lungs. It was news. Wether it was good or bad I didn't really know but I was glad to know that my stroke could have been caused by the HHT rather than the doctors saying "We don't know what caused the stroke". This vid taught me a few things to be aware of, and explains why I have dizzy spells and why some people think I'm lazy, and also could be why I have always been a step below my friends and rivals in school sports. All I can say though is that the perseverance and determination is what guides us and makes us truly strong. Just never give up.
Jacob Nygaard thank you. I am in my junior year of college now and still active in sports. Some days are better/worse than others. This summer I will be having brain surgery to fix an AVM in have in my speech center. Just know we are all in this together.
Honey you are definitely not alone in how you feel! I'm not diagnosed but my father, grandmother and a bunch more of their relatives have all been diagnosed with HHT and I deal with the same feelings and have for as long as i can remember! I'm getting my genetic blood test done on monday but my parents are both convinced i have it as well. I feel you. I go through a lot of the same symptoms as you. It is so incredibly hard. I know you dont know me, but feel free to contact me if you ever want someone to talk to! ❤
I hope u the best I have HHT and I am 32 and my body has been going throw the crazy things sense I turned 28 and I like watching someone that no what I am going because when you tell people that you don’t feel good all the time or your hands are numb my and legs are numb People don’t understand what HHT does to you and there’s nothing we can do about it so it’s nice knowing that there’s other people out there like me
Hi, Mariah. I’m going through it now. My father and some cousins have it as well. Any good foods you’d recommend? I’m new to this, so I’m always sick. I can’t even get out of bed.
if anyone is struggling with PAVMs, Dr. Conrad is a specialist at UCSF and there is an HHT specialist center (the biggest one in the united states) where they can help you with anything HHT related.
I have this my whole life. 42 yr old male. You can email me upon request. I can give you the run down. Dr. McWillams at UCLA is the best. Fixed me up because of PAVMS.
Thank you for posting this video, I am an older woman close to being 50yrs old. A marathon runner and triathlete and have just been diagnosed with HHT. You said so many things that I too am afraid of, and when I look for information it's hard to find other physically active people going through the same thing. I exercise intensely and work so hard to keep up,and it's a scary feeling knowing that something might go wrong while I'm doing the things I love you do. I also have pains in my chest area and migraines when I exercise, I also get lightheaded and feel as though I am going to pass out if I push my self and even when I don't push myself. The most scary thing is I have a daughter and I know have to get her tested, and I know get to worry about her. I appreciate how hard it was to make this video, and I am so glad you did. One other person who understands what I am going through. I look forward to hearing more of your story. Stay strong, remember to think positively, you will over come and be the best you can be.
Christa Dey-Girard thank you for the support. It’s nice knowing there are other active people out there. The best thing I have learned is to know my body the best I can and to get the best help possible. Going to an specialized HHT Center is essential as they will have the best card possible
Funny you replied when you did, just today I saw my HHT specialist for the first time. I am requiring surgery for my PAVM and was told I cannot participate in my Half Iron Man in June. I am so upset but understand why. One day at a time. Thank you for replying
A few years ago when I was in high school in grade eleven, I had a stroke in my cerebellum which caused me to be unable to balance or co-ordinate basic movements. A couple years later, after many visits to neurologists and many other hospital proddings and tests I was finally diagnosed with HHT in my lungs. It was news. Wether it was good or bad I didn't really know but I was glad to know that my stroke could have been caused by the HHT rather than the doctors saying "We don't know what caused the stroke". This vid taught me a few things to be aware of, and explains why I have dizzy spells and why some people think I'm lazy, and also could be why I have always been a step below my friends and rivals in school sports. All I can say though is that the perseverance and determination is what guides us and makes us truly strong. Just never give up.
Jacob Nygaard thank you. I am in my junior year of college now and still active in sports. Some days are better/worse than others. This summer I will be having brain surgery to fix an AVM in have in my speech center. Just know we are all in this together.
Honey you are definitely not alone in how you feel! I'm not diagnosed but my father, grandmother and a bunch more of their relatives have all been diagnosed with HHT and I deal with the same feelings and have for as long as i can remember! I'm getting my genetic blood test done on monday but my parents are both convinced i have it as well. I feel you. I go through a lot of the same symptoms as you. It is so incredibly hard. I know you dont know me, but feel free to contact me if you ever want someone to talk to! ❤
I hope u the best I have HHT and I am 32 and my body has been going throw the crazy things sense I turned 28 and I like watching someone that no what I am going because when you tell people that you don’t feel good all the time or your hands are numb my and legs are numb People don’t understand what HHT does to you and there’s nothing we can do about it so it’s nice knowing that there’s other people out there like me
God bless you And your family.
I have the same problems.
Just trying to live with hht.
Hi, Mariah. I’m going through it now. My father and some cousins have it as well. Any good foods you’d recommend? I’m new to this, so I’m always sick. I can’t even get out of bed.
if anyone is struggling with PAVMs, Dr. Conrad is a specialist at UCSF and there is an HHT specialist center (the biggest one in the united states) where they can help you with anything HHT related.
I go there and they are great for me and my kids
I have this my whole life. 42 yr old male. You can email me upon request. I can give you the run down. Dr. McWillams at UCLA is the best. Fixed me up because of PAVMS.
You ate beatiful still figth yo tengo un problema similar pero no sé si serás eso
Iron is the key. Go get it via IV.
Thank you for posting this video, I am an older woman close to being 50yrs old. A marathon runner and triathlete and have just been diagnosed with HHT. You said so many things that I too am afraid of, and when I look for information it's hard to find other physically active people going through the same thing. I exercise intensely and work so hard to keep up,and it's a scary feeling knowing that something might go wrong while I'm doing the things I love you do. I also have pains in my chest area and migraines when I exercise, I also get lightheaded and feel as though I am going to pass out if I push my self and even when I don't push myself. The most scary thing is I have a daughter and I know have to get her tested, and I know get to worry about her. I appreciate how hard it was to make this video, and I am so glad you did. One other person who understands what I am going through. I look forward to hearing more of your story. Stay strong, remember to think positively, you will over come and be the best you can be.
Christa Dey-Girard thank you for the support. It’s nice knowing there are other active people out there. The best thing I have learned is to know my body the best I can and to get the best help possible. Going to an specialized HHT Center is essential as they will have the best card possible
Funny you replied when you did, just today I saw my HHT specialist for the first time. I am requiring surgery for my PAVM and was told I cannot participate in my Half Iron Man in June. I am so upset but understand why. One day at a time. Thank you for replying
I have this too my whole life we can get through this :)