HHT, or Osler-Rendu-Weber is quite a cunning devil, if I can say so.
People can have enormous and often frequent nosebleeds that complicates normal life, as well as a social life. In the beginning, nosebleeds can be minor and not so massive, but later on, as people age, bleeding can be uncontrollable. Blood transfusions can be necessary too.
There is more risk to HHT patients if they have HHT symptoms in an internal organ. At present, there's no medicine to cure this disease but prognosis for a normal life is good, if treated. (Duodecim, Jura Numminen och Rami Taulu)
When I found out that I have HHT, I was in shock. It was difficult to listen to what was being told to me; I couldn’t take it all in, and I’m a nurse! Thanks to my uncle, I found CureHHT.org.
CUREHHT is written in English. The more I read, the more challenging it was to me to keep focus on it. It was difficult to me to find the information I was looking for. I wasn't sure if I had understood everything correctly.
Later on, I found the HHT international Facebook page. It was almost more challenging to read those pages because I was worrying about our recent diagnosis and desperately needed to have information in the Finnish language, so I could better understand what’s going on.
On the Facebook page, there were a lot of other people asking questions and complaining about their HHT problems. It was distressing to read that there were lot of problems due to the medical field’s lack of HHT knowledge in other countries too, not just Finland.
Then I called to population registry in Finland. They asked me to tell everybody in my family about the HHT gene, because other members of family also could have the same gene mutation and it was important to check it out. This is necessary! The other wise advice I received was to be very patient. I was told to that there is lot of ignorance, also in healthcare, among doctors and nurses.
They say that the more you know the more painful it is. I think that's not true at all.
When I found out more information about HHT and got more knowledge, I felt more safe. Our disease is being followed-up by doctors, and I knew if something went wrong, they now knew about the HHT and could help us better.
In my last post, I spoke about my mother who suffered a cerebral hemorrhage at the age of 47. Eleven years I was thinking that I can have it too. A specialist physician said it wasn't relevant to check out our brains with CT scan, because my father and younger sisters hadn't had any symptoms of cerebral hemorrhage. I was angry because I didn't agree with the argument.
Since then, I had a CT Scan of my brain so I know that there's no AVM's there, and they probably won’t develop. It's more likely that I can have some problems with my lungs and liver in the future.
I am still very worried about my 10 years old son, because he needs to have his brain, liver and lungs examined with CT or HRCT scan. But I also know that if there is some symptoms, it's possible to treat them.
Even though I found the CUREHHT website and the HHT International Facebook pages, I was feeling helpless and tired because the information wasn’t in my native language. I couldn't help myself feeling like a bit of a loner
One day a Finnish lady on HHTinternational told me there was web pages in Facebook for Finnish HHT people too! It was absolutely the best day after we got our diagnosis. Finally, found I other Finnish people with the same disease my family have.
At the time we only had 14 members in our HHT Suomi -Oslerin tauti (HHT Finland -Osler disease) Facebook page. It was wonderful to get knowledge and information in Finnish. There are still lot of things I didn't know. The help and information that was shared in our HHT Finland FB-pages, is based on medical studies; information that I hadn't received from any physicians in Finland before that. That's why I was pretty much clueless.
Now I can share my thoughts, my grief and my happiness with others, in my own language. I got a lot support and comprehension. It was a huge relief to me to write with the others, and it was easier to live with all the fears and concerns because I got great advice and peer support.
In many countries there's hospitals with HHT Centers for Excellence; clinics specializing in care and research for HHT patients. There's own clinics in almost every countries in Europe (and over 20 now in the USA!). But not here in Finland. I got jealous reading about the HHT clinics in Norway, Sweden, Denmark, Germany, France, Italy, Ireland and so on. In Finland there's a possibility to seek help from Sweden. But financially it's unthinkable for most people here.
HHT centers in USA and Europe arrange conferences. It would be awesome to get some Finnish physicians to take part in those. Everybody can take part, but of course it's a lot easier if one is healthy enough, has the money to go and knowledge of the languages being spoken there.
In bigger patient associations, with other diseases, we get counseling about social security, health services and other services, in Finland. Each patient association has their own web-pages. Yet we haven't got any patient association for HHT patients in Finland.
We got our diagnosis about one year ago, but yet, we haven’t received much information from Finish health care, how to live with HHT, and how HHT affects children.
Due to my health, I can't work as much. I'm taking care of my mother and my son too. There is no institution in Finland that pays me for the 20% loss of salary, because I can only 80% working time now. I haven't got any physicians medical certificates about HHT either, so practically HHT ain’t seen as a disease that impairs to ability to work.
I’m working with doctors who are researching the condition and following up with me, but we’re not even close to being “finished.” This is a chronic condition that will always needs care. It's important for doctors, nurses and social workers to talk with the patients and to take into consideration how HHT impacts their lives, their livelihood, how to handle the illness, where to get more information. Currently, there’s nothing!
In Finland you can get help from Norio-center if you have a rare, hereditary disorder. Norio-center is a meeting place for these patients. Norio-center can be found in Helsinki (Helsingfors). But in order to get some help there should be a patient organisation. People with HHT in Finland hasn’t got a patient organisation of their own yet. I don't personally know exactly how the Norio-center works, because I haven't called or been there yet.
So there you go, there's some tips to you and also some stumbling blocks. I hope it's easier to you to find some help, easier than it has been for me. I hope that you have got some help from my writing if you have HHT, or another rare disease.