Remaining politically neutral during General Election 2024


Under guidance from the Electoral Commission and Charity Commission, it's important that Scope remains politically neutral during General Elections.

While we understand that this period will see many passionate discussions and do not want to discourage open discussion, we cannot allow discussions which are purely intended to influence voting.

As ever, please make sure that your comments remain respectful of other people's opinions and keep to our online community house rules.
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Looking for advice on whether to seek genetic test for child

Options
Apmartin
Apmartin Community member Posts: 2 Listener

Hello, my partner has HNPP a genetic condition that is degenerative and causes pain and loss of sensation in his hands, arms and legs. It is Hereditary and so our two children (age 6 and 1 years old) have a 50% chance of also having it.

We had assumed initially that we wouldn't get them tested and would instead let them choose whether to as adults. My partner only got a diagnosis as an adult following years of unexplained pain.

Our 6 year old son has mentioned a few things recently that have made me wonder if he may have it (he mentioned tingly cold fingers after riding his bike). But that may be unrelated.

I am wondering if anyone has been in the same situation and could help us think through the pros and cons. We don't want to worry him with something if we don't have to, but I also wonder if there's things we could do now to protect him if we did know he had it. Such as avoiding certain physical exertions on his limbs.

Thanks in advance for your thoughts.

Comments

  • Beverley_Scope
    Beverley_Scope Scope Posts: 96 Pioneering
    Options

    Hi @Apmartin

    A warm welcome to the community.

    My name is Beverley, and I am a family services advisor for Scope.

    I can understand your concerns about talking to your children. Especially as there is a chance that this may not affect them.

    It might be worth contacting your GP about your son's fingers if it continues to happen. You could then discuss your concerns.

    Global Genes is a rare condition centre which you could contact for more information.

    They don't currently have a lot of information about Hereditary Neuropathy with Liability to Pressure Palsies (HNPP). They do have experts in rare genetic conditions and may be able to give you advice on this matter. You can contact them through their concierge help.

    You may also be able to get information through one of the sites suggested by the NHS Support Groups page.

    I hope they are able to help you and ease your mind.

    Beverley

    Beverley Davies
    Family Services Advisor

Complete our feedback form and tell us how we can make the community better.
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.