My sister is 34 and she has Alzheimer

Discussion in 'Younger people with dementia and their carers' started by celycarmo, Aug 21, 2019.

  1. celycarmo

    celycarmo New member

    Aug 20, 2019
    5
    Hello everyone, I'm Brazilian and has just joined the forum. I've recently received the diagnostic of my youngest sister, and she has Alzheimer in the second stage. She is only 34, and as far as I could track, she was looking for help of neurologists since she was 28 with symptoms of headache, memory loss and excessive tiredness for her age, but any doctor could identify the problem, or pay enough attention to her symptoms, treated as burnout. Her symptoms of memory loss and difficulty of completing even common daily tasks got worse in the past 2 years. Last year she got pregnant, and after my nephew was born, last September, psychotic symptoms have exploded. Doctors have ignored her symptoms before the pregnancy, again, and she spent 8 months being treated as a postpartum depression patient, with a bunch of strong antidepressants and
    psychotropics. She got worse and worse, until last April, when she started having convulsion. For the fisrt time doctors have considered a neurological disease. I brought her to Sao Paulo, in a stage she could not talk, walk or even recognize her son, and after 40 days of dozens of exams and 30 days in a hospital, she went to a neueological surgery for brain biopsy that could clarify the diagnostic, confirmed by a genetic panelm Early Alzheimer. Genetic mutation of the PEGN1, which is known for causing familiar Alzheimer, though we don't have any previous similar case in our family. Sorry by the long story, but it is too difficult to summarize and deal, especially because there isn't much information in Brazil around Early Alzheimer. She is responding very well to the treatment with Donepezilla and therapies that includes music therapy, physiotheraphy and lots of religious support of any kind. However she is living like a child, with 24 hours care, and I'd like to help her more. I'm here looking for similar cases, to find information on how I can help her, and for mutual support.
     
  2. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    88
    Oh my goodness I am so sorry to read about your poor sister, that must be devastating for you and your poor family. I can’t offer much advice I’m new here myself but there will be lots of people on here able to help and support you so keep posting. This is an amazing forum with lots of really knowledgeable people. Sending you big hugs x
     
  3. celycarmo

    celycarmo New member

    Aug 20, 2019
    5

    Rosserk, I really appreciate your reply, thanks for your kind words and hug. It's not easy for us, and I cannot think of how is difficult for her. But we have to be strong to support her, and have serenity to accept this is part of life. In fact we start learning what is really important in life, and how we are blessed for living. Every day, here and now. I wish you can also find the support you're looking for.
     
  4. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,432
    Female
    Dundee
    I’m so sorry to read of your situation. How tragic.

    I’m glad you’ve found this forum as there will always be someone here to listen and support. I had a look to see if there is a local association where you might find some support as well. There is a helpline number on this site, it might be worth giving them a ring to see if there is something local which might be of help -

    https://www.alz.org/help-support/i-have-alz

    I also found this address which has a helpline number -

    FEBRAZ - Federação Brasileira de Associaçãoes de Alzheimer
    R. Borges Lagoa #1080
    Conjunto 904, Vila Clementino
    São Paulo, Brazil
    04038-002
    Tel: +55 11 3237 0385
    Helpline: 0 800 55 1906
    Email: febrazbr@gmail.com

    Keep posting here too.
     
  5. celycarmo

    celycarmo New member

    Aug 20, 2019
    5
    Izzy, thanks a lot for sharing :) I heard about Febraz but they don't have a website, it is great you have their address. Abraz is one of their associations, and I'm trying to get more information on their support groups, so I could join the meetings in Sao Paulo, but my sister, family and nurse live in the countryside- in Minas Gerais, where I could not find any association yet. Most of information shared by the associations on social networks are institutional or focused on elderly people, it's difficult to find specific information on her problem. I found in the UK assocation's website a piece of information that there are only 400 families around the world with this kind of Alzheimer caused by genetic mutation on PEGN1 gene, and it is usually a familiar problem that take people in the 30s. In the case of my sister, I believe it is even more rare, considering there is not a familiar history. My grandparents were cousins, and this may be an explanation for a recent mutation that only took my sister in a family with 8 brothers and sisters, and lots of cousins. I'd like to understand why, get to know similar cases, and if there is anything else we can do, for her or for the future generations. May you or someone else in the group reccomend some specialists around the world focused on studying Alzheimer in young people, so I can search for their work? I apprecatte your support.
     
  6. canary

    canary Registered User

    Feb 25, 2014
    10,189
    Female
    South coast
  7. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    628
    Oh my lovely, I’m so sorry
    Sending love & hugs
    Xxx
     
  8. celycarmo

    celycarmo New member

    Aug 20, 2019
    5
    Excellent Canary, thank you, this is super helpful.
     
  9. celycarmo

    celycarmo New member

    Aug 20, 2019
    5
    Love & hugs for you as well :)
     
  10. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,432
    Female
    Dundee
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    628
    I see you had a sleepless night with a late night early morning post, hope today’s a better day my lovely
    X
     

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