YPAHD Special Announcement!

Posted on Apr 25, 2015 in News

Hello Everyone!!

I’m really excited to announce that we have been granted approval to send to YPAHDites to Dallas Texas this June for the Huntington Society of America’s national conference and their National Youth Alliance Day.

This is a great opportunity to get an insight on how the HD world affects those in the USA and how much we can learn from each other. It allows you to connect to fellow youth who share the same obstacles and passions as us. If you are interested in this opportunity, please read through the attached sheet for instructions on how to apply.

As an individual who has been lucky enough to have this experience before, I strongly encourage you to apply and seize an opportunity to strengthen yourself and be encouraged to continue this journey of finding a cure for HD.

If you have any questions, please do not hesitate to ask. 🙂

Talk soon.

Jaclyn Skinner
YPAHD President

2015 HDSA Convention – YPAHD Delegate Application (PDF Download)

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Youth Mentorship Program

Posted on Mar 14, 2015 in News

There has been a great response to the Mentorship Program, and they are hoping to gain more mentees!

What is a Mentee?
Mentees are between the ages of 12-20 years old and are affected by HD.
The program will give you an opportunity to:

  • Build a positive relationship with a mentor who can provide valuable support.
  • Ask questions (about life in general or HD).

* Your mentor will keep your conversations private and safe.

If you are interested in applying or have any questions, please contact Erin Stephen or Lindsay Groot.

Read more on the Youth Mentorship Program page.

Click to view the brochure below:

MentorshipPamphlet1 MentorshipPamphlet2

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Nominations for Election

Posted on Nov 14, 2014 in News

It’s election time and we are asking all of you to submit your nominations for the executive positions no later than November 19, 2014.

The positions include:

  • President
  • Vice President
  • Secretary
  • Advocacy director
  • Social media coordinator
  • Website editor

If you would like to put your name forward, or nominate someone for a position, please send your nomination to Devin at dbonner@huntingtonsociety.ca

Elections will take place via email between November 19th and November 28th.

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Genetic Testing

Posted on May 17, 2013 in Young Adults

In 1993, scientists discovered exactly where the gene which causes Huntington’s disease is located in our DNA and figured out what it was doing. Because of this people are now able to have what is called a ‘predictive test’. It is known as a predictive test because the test can be taken by people at risk of Huntington’s disease who currently show no symptoms and want to learn whether they will develop the condition in the future. The result of this test will usually be able to tell a person whether they have the expanded gene or not.

It is important to note that if a person already has symptoms but has not been diagnosed, then a different approach would be taken which is known as ‘symptomatic testing’. This would involve that person going through a series of assessments with a doctor to confirm a diagnosis of Huntington’s disease and is quite different to ‘Predictive Testing’, which is what we are focusing on in this section.

The Science Behind Testing

You may hear people say that they ‘have the gene’ when referring to themselves as having Huntington’s disease. But the truth is, all humans have the gene that may cause Huntington’s disease – even those who never develop the condition. So if we all have the gene, why do some develop Huntington’s disease when others do not? The difference is people who develop symptoms of Huntington’s disease have a larger expansion of the gene than normal.

What is This Gene Expansion?

Without getting too scientific, there is a section, in the gene, which repeats itself over and over again. This is known as a ‘CAG repeat’ and each individual has a different amount of repeats. However, people with Huntington’s disease tend to have more repeats than usual, which means that the gene expands more than it should. This expansion can lead to Huntington’s disease.

The reason we are explaining CAG repeats is because of their relevance to predictive testing for Huntington’s disease. When people at-risk for Huntington’s disease have a predictive test, that person’s DNA is sent to a lab, and the clinical scientists will use special machines and lab techniques that will count how many CAG repeats that person has in the gene specific to Huntington’s disease. Once they know how many repeats a person has, they can tell if they will get the disease or not.

How Many CAG Repeats Will Cause Huntington’s Disease?

CAG repeats are split into four categories. If a person has less than 27 CAG repeats then they are what is called, ‘negative’ – meaning they will not get Huntington’s disease and they are not at risk of passing the disease onto any children that person has.

Someone who has 40 CAG repeats or more will definitely develop symptoms of Huntington’s disease in their lifetime (although it is not possible to say when symptoms will start) and the risk to any children is 50%.

If a person has between 27-35 CAG repeats, they will not develop Huntington’s disease, but there will still be a very small risk of that person passing on the disease to any children (the risk is about 5%).

Whereas somebody who has a CAG repeat between 36-39, would be in what is sometimes called the ‘grey area’, because it is uncertain whether they will develop symptoms in their lifetime or not.

Less than 27 CAG repeats

Negative – will not develop Huntington’s disease and children not at risk

27-35 CAG repeats

Negative – will not develop the disease but small risk to children.

36-39 CAG repeats

Positive – but may develop symptoms at an older age. 50% risk to children.

40+ CAG repeats

Positive – will develop symptoms in your lifetime. 50% risk to children.

Technically people in the 36-39 CAG repeat range do have the expanded gene, but people in this range may develop symptoms of Huntington’s disease at an older age. However, the risk of passing the expanded gene onto any children is 50%.

If you have been tested it is always important to be clear about the result of your predictive test. If you have any questions, or do not understand what the result has shown, do go back to the clinician who arranged your test.

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Genetic Counseling & Testing Process

Posted on May 17, 2013 in Young Adults

Testing is ultimately about finding out your CAG repeat—and this can be done with a blood test. But taking a predictive test in order to find out whether you will get Huntington’s disease or not is a huge decision to make in one’s life, and an enormous thing to deal with emotionally. What if a person gets a positive result? Would they be able to cope? Can they live positively with this news? These are questions that have to be asked, and that is why, before anybody can have a predictive test for Huntington’s disease, they should undergo genetic counseling. How long the counseling takes depends on you and your counselor, and your particular personal circumstances but generally it can take anything from 2-6 months. In that time many things are discussed, as one Genetic Counselor explains:

“It’s very much a two way process whereby you can explore the option of a predictive test and what it entails, including the possible test outcomes. There may be discussions around alternatives to testing, possible impact on other family members and the question of timing of the test. It can vary how ready an individual feels to proceed with a test—and that’s fine—we’d want to take it at a pace that feels right for the individual.”

Tiffany, Genetic Counselor

To begin the testing process you usually need to speak with your doctor, who will then put you in contact with your local genetics department. In order to be tested you normally have to be at least 18 years old – although if you are under 18, you can still speak with a genetic counselor about what a test involves and any other issues you may have with regards to Huntington’s disease.

If at any stage during the counseling process you change your mind and do not want to be tested, you can stop the process straight away. Some people even get all the way to having their blood taken and decide now is not the right time for them to hear their results, so they ask for their results to be kept under lock and key until they feel ready to collect them. The doctors and genetic counselors will not read your results until you’ve decided to receive the news.

It Is Your Choice

It is very important to remember that testing is a personal choice – a choice only you have the right to make. Some people in your life may tell you to test or not to test. But it is not up to them at all – it is entirely your decision and you should only get tested if you are sure this is what you want.

There is no right or wrong answer when it comes to making a decision about testing. We all live different lives and we all make different decisions. Some will choose to test (& will vary at what stage in their life they choose to do so), others will not – there are perfectly good reasons for deciding one way or the other. Although it is your decision, you may also wish to discuss your feelings with those closest to you (like a partner) for whom the result will also have a bearing. But ultimately it is your choice.

Emotional Aspects of the Testing Process

Aside from the practical ways to be prepared, testing is also a very emotional process from start to finish. From making the decision to test, going to your genetic counseling sessions, having your blood taken and receiving your result – each stage provides its own emotional hurdles to overcome.

Dealing with the emotions of testing is incredibly challenging for anyone. When you take into account that the whole process can take months, it can become very difficult for a person to maintain their calm throughout. You may have many ups and downs during the process, don’t be alarmed by this, it is quite normal and you should keep discussing your emotions with the genetic counselor (that is what they are there for). You could also seek advice from others who have gone through the testing process for Huntington’s disease already and have faced the same emotions and difficulties.

The Waiting Period

There is a part of the testing process that has not been highlighted yet, ‘the waiting period’. This period covers the time between having your blood sample taken and receiving your test results. People have to wait for weeks in-between their blood being taken and their test results appointment. Just how long that wait is depends on where you live and the clinic you are using. But this can be an incredibly difficult time for a person in the testing process; those weeks can often feel like months! People can become very anxious during the waiting period and it is important to try and stay busy during this time.

If you feel it would be helpful to speak to your genetic counselor during this period do call them (they will not know your result at this stage). Or again, seek advice and support from those who have experienced the waiting period themselves – this can be quite comforting.

Preparing for Your Results

Preparing for results is another challenging aspect of the testing process. Many people tend to develop a ‘feeling’ one way or the other about whether they are going to test positive or negative. Obviously you can’t guess or ‘feel’ what result you are going to get, and these guesses can end up causing more shock when you receive your results (should you get the result you weren’t expecting). It can often be good just to remind yourself during the process that until you test you are ‘at-risk’, rather than trying to guess one way or the other. However, preparing for your results can be useful and during your counseling you may be asked to think about what you will do if you test positive or negative. This is a good exercise because it allows you to really think and plan how you will react to your results, whatever they may be.

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