Genetic conditions that affect mental health?

Genetic condition that Affect mental health?


 I am 35 I have my 11 year old I have been doing a lot of self-reflecting and kims questions couldn’t have come at a better time in my life. .22q is a total body disorder. It effects from head to toes.
Life can be a lonely place for a mother too, no one really knows what you are going through, until, that is, when you meet someone else in the same boat. It’s a huge relief to connect with other families, other mothers who have had the same experience in my case there is no boat for me. I don’t have many others who are adults with 22q and have children with 22q.
I don’t really fit in. I had to make peace with the fact I was born to stand out. Bella and I are struggling with the same daily concerns as you are but we don’t get that sense of a ‘new’ family when we join support groups. I had to create my own.
 A few years ago a friend and I started a rare genetics support group that met up locally in a Mcdonalds  
I shared how I passed out once at a children’s birthday party. Where my daughter saw me curled up. I ended up in the hospital  few times having my stomach pumped in what I now look back and see was my cry for attention and help because I didn’t understand at the time what was happening to me why I was throwing up and passing out when the world became overwhelming.
Stress and panic did a number on me. Being a new mom is fighting but being a mom to a child who has the same genetic disorder that I have was down right scary. What kept playing in my mind was would she be just like my siblings who have 22q and much more sever conditions from 22q would my child pass away like my brother did while he was a sleep. I had so many questions none of the so called experts could answer and I had to become my own expert.
 It put me in the position I am now with a understanding that not many others have from all perspectives mom adult sibling of someone with 22q I seen the belly of the beast sort to speak but I’ve also seen hope and others living with it and not even knowing about it like myself until I was 21. Sure I appear fine now as does my child but that came with a lot of hard soul searching, group and individual therapy sessions that included exposure therapy, eft tapping and cbt as well as dbt skills. writing journals and dumping out old thoughts for new ones and new truths and discovering my worth in God
 only now looking back that I can see the huge emotional and psychological toll that loving and caring for a child with special needs can have on a family.
 I had to learn my limits. learn it was okay to not be okay ]Mental health is part genetics the other part is choices we make and the effects those actions have on others.

Rare Champion of hope nominee Amanda Ripsam for 22q advocacy

I am honored to be a nominee for the rare champions of hope

My husband Adam and I

My husband Adam and I

I am honored to be a nominee for the rare champions of hope. Hundreds of individuals and organizations worldwide were nominated by their peers for the 2017 RARE Champion of Hope awards to honor their notable efforts in rare disease advocacy, science, collaborative sciences, and medical care and treatment. Please see the full list of nominees and a map demonstrating the various locations of those nominated below.  The purpose of the Tribute to Champions of Hope is to recognize those who are uniquely attacking the challenges they face in the fight against rare disease; those who are thinking outside of the box and working tirelessly, not focusing on what was, but setting their sites on what can/will be. 

I have always been focused on the what I can do vers what I can't do as an adult and mom who has 22q and raising my own child with 22q11.2 deletion syndrome. I also have a father and three siblings one of my siblings a half brother passed away at the age of 6.  In total there are 6 of us with 22q in our family. I bring all kinds of perspectives and that's where my passion lies in honor of my brother quietly of course and in providing hope for my daughter. I share my story here on my website and have blogged since 2014 since I started blogging there have been so many other 22q people who have also wanted to blog and some people even want to do all that Bella and I can do. At first, it was not easy doing the research talking to doctors hunting down specialist but I did it and now my daughter is 10 and I'm trained and ready to speak out and up for this disorder that is unheard of so often way too often by er doctors nurses and teachers.  The people who interact with my daughter all are aware of 22q and that made me have the desire to spread awareness the old fashion grass roots way of word of mouth to everyone and anyone I can.  My passion is why I am honored to be one of your nominees to share my story if i can not attend I would love if everyone who hears about me and my story to subscribe to my blog so I know how many are out there who want to hear my story.

2016 Tribute to Champions of Hope Recap

The 5th Annual Tribute to Champions of Hope was host to 670 attendees and 27 honorees. The night will be remembered for its courageous honorees, touching acceptance speeches, and amazing performances. 

I am in the black top Bella is in the one in the red 22q hat and Adam hubby is in yellow. We are standing with friends for a picture from last years 22q at the zoo in Grand Rapids Michigan we had a small but mighty group spreading awareness

I am in the black top Bella is in the one in the red 22q hat and Adam hubby is in yellow. We are standing with friends for a picture from last years 22q at the zoo in Grand Rapids Michigan we had a small but mighty group spreading awareness

The link below shares the list of others who have also been nominated.  This is a huge honor and I thank everyone who voted to get me here.

I also thank every single blog subscriber and everyone who has been supportive of our journey.

Love Amanda Ripsam and Family