#HuntingtonsInMind - A month in the life of
During Huntington’s disease awareness month, we wanted to follow some of our younger service users [those that access our youth engagement service - HDYES] in order to show the impact that the disease has on the younger members of the family whether they are tested or not.
These weekly diary entries are from Megan. Megan is 20 years old and was recently diagnosed. Both her mother and aunty have Huntington’s disease. Megan found out about the disease when she was just 13 years old.
I didn’t tell anyone to begin with as I was scared of how people would perceive me.
Week one:
This week wasn’t great. I’ve been feeling the repercussions of being diagnosed all week and it has affected me quite badly. It’s been a tough week as I had to explain to my manager that I needed to go home due to my mental health being so poor, and it has affected my ability to work. They didn’t understand what Huntington’s is which meant that I was going to have to have to go into more detail about it, and at that point, I didn’t want to. There are some friends at work who have been there for me, which this week, has been a blessing. Sometimes work does help me to forget about my diagnosis, but it can be too overwhelming at times.
Each week throughout the campaign, Megan will share her thoughts and feelings.
If you are affected by Huntington’s disease and are in need of support or advice, please contact us on 0151 331 5444 or email [email protected]. Our dedicated phone line is open 9 am – 5 pm, Monday – Friday with Specialist Advisers waiting at the other end to offer you support. If you are under 25 years old you can access our Huntington's disease youth engagement service (HDYES).
During Huntington’s disease awareness month, we wanted to follow some of our younger service users [those that access our youth engagement service - HDYES] in order to show the impact that the disease has on the younger members of the family whether they are tested or not.
These weekly diary entries are from Megan. Megan is 20 years old and was recently diagnosed. Both her mother and aunty have Huntington’s disease. Megan found out about the disease when she was just 13 years old.
I didn’t tell anyone to begin with as I was scared of how people would perceive me.
Week one:
This week wasn’t great. I’ve been feeling the repercussions of being diagnosed all week and it has affected me quite badly. It’s been a tough week as I had to explain to my manager that I needed to go home due to my mental health being so poor, and it has affected my ability to work. They didn’t understand what Huntington’s is which meant that I was going to have to have to go into more detail about it, and at that point, I didn’t want to. There are some friends at work who have been there for me, which this week, has been a blessing. Sometimes work does help me to forget about my diagnosis, but it can be too overwhelming at times.
Each week throughout the campaign, Megan will share her thoughts and feelings.
If you are affected by Huntington’s disease and are in need of support or advice, please contact us on 0151 331 5444 or email [email protected]. Our dedicated phone line is open 9 am – 5 pm, Monday – Friday with Specialist Advisers waiting at the other end to offer you support. If you are under 25 years old you can access our Huntington's disease youth engagement service (HDYES).