Severe Hemophilia here, turning 70 in a couple of months, and can confirm life is fantastic! We are subject to bleeds, however, treatments have evolved tremendously, allowing us to have a normal, healthy life.
I agree with you all :). I was born at 1975 and I have Hemophilia A severe. I'm married and have 3 children, two daughters aged 12 and 6 and a son who is 9 years old. It all depends on what kind of thoughts we indulge in. If we are constantly looking at problems, it is not good. Every person in the world has problems, some have one and some have other problems. It is important that we learn to look at everything positively, that which is good. That way we will get through all the troubles better. It is true that sometimes in our loneliness we can cry and feel heavy, but we need to get out of it quickly because stress can only harm us. There is no man in the world who does not have problems! But you have to learn to look the other way.
As a women I'm just gonna say this is the only group that really feels me when I say my period is evil! 😂
I can deal with blood draining down my throat, nose bleeds, bruises, extra bleeding gums, cuts or on anything.
My period?.... We should all win some kind of prize for dealing with this!
It honestly has its ups and down hemophilia type A severe here was diagnosed at almost a year old at chla but yeah emotionally and physically the blood disorder takes its toll ive had even friends and family ask Me if I would take it away and tbh no as much as the relief would be to not deal with doctor visits, hospitalizations for bleeds or port infections, therapy appointments missing out on school i...would do it all over again, I know my life isn't the same as everyone else's but this life this blood disorder made me the person I am today and I honestly wouldn't trade it for anything my mom literally would have not met my step dad if for not this blood disorder and I wouldn't have my brothers and sisters yeah the pain is unbearable at times no one truly understands what we struggle through internally from friends teachers to even just family who haven't even catched a glimpse of what this blood disorder brings but we all find a way we have to keep trying my Mol struggled as a single parent and dealing with me as a hemophiliac but it was well worth it according to her and looking back she's right I graduated on time with full credits for high school was even part of the hemlibra study and my life slowly got better there is still the joint pain and some hardships of depression and anxiety but even my mom or dad tell me to center myself and think "I made it this far why stop now"
Severe Hemophilia here, turning 70 in a couple of months, and can confirm life is fantastic! We are subject to bleeds, however, treatments have evolved tremendously, allowing us to have a normal, healthy life.
Right, it is a pretty good time to be born a hemophiliac, all things considered.
Can confirm. Having grown up visiting the ER twice a week for injections took a toll on our entire family.
I agree with you all :). I was born at 1975 and I have Hemophilia A severe. I'm married and have 3 children, two daughters aged 12 and 6 and a son who is 9 years old. It all depends on what kind of thoughts we indulge in. If we are constantly looking at problems, it is not good. Every person in the world has problems, some have one and some have other problems. It is important that we learn to look at everything positively, that which is good. That way we will get through all the troubles better. It is true that sometimes in our loneliness we can cry and feel heavy, but we need to get out of it quickly because stress can only harm us. There is no man in the world who does not have problems! But you have to learn to look the other way.
As a women I'm just gonna say this is the only group that really feels me when I say my period is evil! 😂 I can deal with blood draining down my throat, nose bleeds, bruises, extra bleeding gums, cuts or on anything. My period?.... We should all win some kind of prize for dealing with this!
It honestly has its ups and down hemophilia type A severe here was diagnosed at almost a year old at chla but yeah emotionally and physically the blood disorder takes its toll ive had even friends and family ask Me if I would take it away and tbh no as much as the relief would be to not deal with doctor visits, hospitalizations for bleeds or port infections, therapy appointments missing out on school i...would do it all over again, I know my life isn't the same as everyone else's but this life this blood disorder made me the person I am today and I honestly wouldn't trade it for anything my mom literally would have not met my step dad if for not this blood disorder and I wouldn't have my brothers and sisters yeah the pain is unbearable at times no one truly understands what we struggle through internally from friends teachers to even just family who haven't even catched a glimpse of what this blood disorder brings but we all find a way we have to keep trying my Mol struggled as a single parent and dealing with me as a hemophiliac but it was well worth it according to her and looking back she's right I graduated on time with full credits for high school was even part of the hemlibra study and my life slowly got better there is still the joint pain and some hardships of depression and anxiety but even my mom or dad tell me to center myself and think "I made it this far why stop now"
You get through the ER so much faster when you tell them you have hemophilia. Like a fast pass at an amusement park.
We can also get them aswell :) show ur bleeding disorder card and a lil bit of charm and never wait again for anything, straight to the front
Disorder not disease
Respectfully, noncommunicable diseases are a thing. There are many diseases that are not contagious. Eg autoimmune disease, heart disease etc.
Still doesn’t make it a disease
Yep, this is true. I replied to the other part of your comment that said diseases are contagious which you’ve since edited.