Telling children about HSP

Posted - February 2015 in Your Say

If, when and how?

I would like to hear from other HSP members, on their approach to informing children concerning HSP. I understand that for those parents with obvious symptoms, children may know about the implications to them at a earlier age. In comparison, for those with a HSP diagnosis who show only minor symptoms that may not be detected by children, the question remains as the appropriate time and age to inform children. I am talking about the dominant form of HSP, where children would have a 50% chance of inheritance.

Is informing a child who is 15 or 17 for example something that others recommend? What about a child’s mental health, or decisions regarding their future?

I am interested to hear feedback from other HSP diagnosed individuals.

Comments on this story

  1. Cat posted at 1:57 pm on 28 February 2015Reply

    I’m in a similar position. I have the dominant form of HSP and have not yet told my daughter who is 9. I don’t know when is the right time/age to talk to her about it and her chances of developing it – she has no symptoms herself (yet?). Eventually I want to also discuss her chances of passing on the gene if/when she has children herself. I feel she is too young now to go into great detail, and as yet she hasn’t asked why I walk the way I do, but she has certainly noticed my gait. I’m interested to hear others thoughts or experiences on how/when they bring this up with their children.

  2. Tenille posted at 9:25 pm on 28 February 2015Reply

    Hi, for us we discuss it as issues arise. Our eldest son has hsp and is 12. My husband and none of our other children have any symptoms but my husband’s cousin and brother do. We are very open and just answer any questions that are asked. Our eldest has already asked (not in depth) whether he could give it to his children. I explained there is a chance but you never know what they may come up with in the future. For the moment that is enough information for him. Our second child has been tested and is clear so we don’t need to worry about him having it, but we have discussed with the geneticist about getting the other boys checked when they are ready to start a family.

  3. Jamie posted at 8:46 pm on 24 March 2015Reply

    Hi, I am 29 with HSP. My mom and her identical twin sister both have it. Both my brother and I have it, however, none of my cousins have it. My mom’s symptoms are much more severe than my brother or mine. My brother and I have both had symptoms when we first started walking. I never knew anything was wrong with me, because my symptoms were not terribly noticeable, and I was too busy playing with my friends to notice.

    I think it has gotten worse over the years, and it has affected my daily life. I love working out, and I wish I could run long distances, but because of my gait, my feet drag, I get tired so quickly. Yoga is also an issue for me because of leg weakness and flexibility.

    Anyway, my parents never really discussed it with me or my brother growing up. I honestly cannot ever remember talking with them about it. I have had to do my own research now to find out more about it. I wish my parents had sat me down and talked with me about it.

    The fact that they never seriously spoke to me about it makes me feel like it is something I should be ashamed of. I still get very nervous walking around people that I don’t know, because I know the looks are going to happen, and I still get really uncomfortable when I get the, “Are you okay?”, “Is your leg hurting?”, “Did you pull a muscle?” questions. I know it’s nothing to be embarrassed about, but for me it is.

    I think as a parent it is important for you to explain to your kids what is, or what could potentially, happen to them. I personally feel that if my parents had explained what was “wrong” with me, I wouldn’t be as embarrassed about it. And yes, I am terrified that I will give it to my children. I don’t want them to go through the struggles that I have.

  4. Ken posted at 10:36 am on 31 March 2016Reply

    I have shared with my children with 2 showing signs of HSP. I think it is very important to let the children know so they can prepare and also follow the progress with the research. My children are now adults and I believe well informed. They can tell their work colleagues what the condition is when they notice the odd gait. How soon to tell? As early as possible – in my case my children were in their teens as I did not know that I had HSP until I was 40 although I had always had the walk. My dad had it but he was thought to have had MS, Parkinsons – was not well know then and he died without knowing so cannot blame him for not talking to me. I though my walking may have been due to seeing him walk???? As more information becomes available I think the more known the better – certainly letting others know (friends and work colleagues) could help with fund raising which is critical for a rare disease such as HSP. My sons have been able to take action to keep themselves fit and there is very strong research confirming the importance of physical activity for chronic illnesses and while HSP may not be chronic, I have found fitness to be very important.

  5. Kelly posted at 1:22 am on 31 January 2017Reply

    I have the dominant form of HSP as did my late mother. She was not diagnosed with it until after the medics were exploring why my walking milestone was delayed. I have one sister without HSP and she has no offspring. I have recently had a baby despite the possibility of the gene being passed on. My partner and I will be speaking openly to our daughter about the possibilty that she may have the gene as early as possible. I hope she will be able to see that having HSP doesnt mean that she cannot join her peers in the playground and travel etc as I have done. At this stage her leg muscles seem strong and my particular gene cannot be traced for certanity as to whether she carries the gene. I intend on letting her make her own mind about having children later in life.

  6. Kevin posted at 10:04 pm on 5 June 2018Reply

    I have HSP (SPG4) and was diagnosed after extensive testing when I was in my early 40s. At that point my visual symptoms were that I walked with a poor gait/limp. So, while a noticeable issue, nothing significant (late & slow onset HSP).

    We have 4 daughters, who were finishing high school, and preparing for the real world etc. therefore we made the choice to not tell them at that point. They were under enough stress and did not need this to weigh on their choices in life.

    In the years to come, my mobility began to falter to the point that my girls began to question what was happening. It was only at this point that we chose to tell then of my condition, and we explained that it was hereditary. We also explained to them that whilst this being hereditary, that there was a 50% chance that they also have the condition. Additionally, we explained that if they had the condition, that it would develop and manifest itself in a similar fashion as it had on me.

    We felt there was no gain in worrying them about something before they had the capacity to better understand the condition, and its potential impact on them. I have made a point of living a full life and active life (10 years Aust Defence force, 6 years electrical contractor, 10 years defence project manager) which has given me the opportunity of telling them that if they did have the condition, they can still pursue their dreams.

    Personally, I feel telling children any sooner than necessary, can adversely limit their future unnecessarily.

  7. Ad posted at 1:44 am on 10 August 2018Reply

    My HSP was already fairly advanced when my daughter was born. being the stay at home dad she would attend medical appointments with me. At the age of 3 she informed my neuro that she was going to be a doctor to, ‘fix daddy’s legs.’

    My daughter is 15 now and shows no signs of HSP. She’s fairly bright and is starting her final two years of high school. She still wants to be a doctor and has discussed multiple pathways to achieve this. She realises now that she can’t fix dad’s legs but she could do something to advance other research.

    We’ve always discussed HSP openly and tried to not have it impact on her life too much. We have forgone her having any testing for now as my wife and I feel that it should be her decision to get tested to see if she has the gene. As she has gotten older we have discussed with her considering testing when she wants to start a family so she can make informed choices about what she wants to do including IVF and gene testing all as options.

    My neuro also works with children so my daughter has been seeing her annually to get a check-up. All good so far. I also have a psych that is part of the health team aroud me and he suggested that we arrange a child psych she could see to discuss significant life changes for me that impact on the family. Things like when I first got a wheelchair, just so she had a third party she could speak openly to about where she was at and how she felt about things. Was a great piece of advice and one we have continued with whenever we have a significant change in my condition.

    I think the decision to tell a child depends on the child itself and the support structures and resources in place to help manage it. Above all it should be done in an open and caring environment where no question is off limits if the child wishes to ask it. My daughter has seen the positives I have taken away from HSP having someone with a disability in the home means she can appreciate the difficulties that are then carried by the entire family and not just the person with the condition. We (just my daughter and I, my wife leaves this as ‘our thing’) make a point every summer to both be involved in volunteering at Disabled Surf Australia. It helps put some perspective on the numerous challenges and difficulties faced by families with many varied conditions and the ways in which communities can help families live as normal a life as possible and engage in everyday Australian activities (like a day at the beach) many individuals and families take for granted.

    Our children may just surprise us when we trust them with difficult truths as long as it is done in a supportive and open environment.

    Different is not broken. 🙂

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