Intro from a New/Old Parent

Hi all - I am both a new parent of a Type 1 & an old parent of a Type 1. My daughter (now 16) was diagnosed at 21 months old. My son (now 22) was diagnosed 3 days ago. So, both my kids are now Type 1! It's been a tough 3 days - and our entire family is devastated. 14 years ago, my wife & I were terrified - we had absolutely no knowledge of Diabetes, and we suddenly had a baby that needed fingersticks & MDI. It almost buried us as a family. Now, of course, I'm not so much scared - as just really, really angry. Angry at the universe for dumping this on both my children and angry at the slow medical/political progress over the last 14 years. 

My daughter has been pumping for ~5 years, and just recently switched to the new Medtronic 530G w/ Enlite CGM. She was formerly on an Animas pump and occasionally also used the Dexcom CGM.

I have known other family "clusters" of Type 1 and have always thought it odd - but never thought it would hit us. What's the latest thinking on this? Our son lives at home, and we've lived in the same home since before he was born, so both kids have been in the same environment their entire lives. One family "cluster" I know of had the Father, Uncle and two kids all Type 1. Very weird!

I am so sorry, that must be so hard but on the bright side you know what to do, your daughter can help your son if needed and you can all support each other through it.

I've heard of clusters as you call it and one of our community managers has type 1 as well as her daughter. I am going to tell her about this post so you guys can chat!

Hi.  Katie here, the one Gina mentioned.  I was dx with T1D at the age of 2.  My oldest daughter (now 13) was diagnosed at the age of four.  Like you, I was angry.  VERY ANGRY.  There was no one before me with T1D in my family, but... there was rheumatoid arthritis.  And my husband had a grandmother with MS, another autoimmune disease.  He also has a 1st cousin with T1D.  

Anyway, I wanted to let you know that I understand your anger.  I also know of families who have more than one child with T1D.   I'm not sure when it's defined as a cluster, but I know a family that has like 15 first degree relatives with T1D - that is a cluster.  I know families wtih just one lone T1D.  And families with three kids with t1d.  

So - what do you do?  I've said this a few times on this site but the clouds started to part three weeks after my daughter was DX when we attended our first JDRF Walk to Cure Diabetes.    We are now into our 10th year of having two with T1D in our house.  We have our bad days, don't get me wrong.   But, doing positive things with my time (like - volunteering here on for diabetes support, funding (we Walk to Cure and Ride to Cure Diabetes every year) and research (my youngest daughter is 11 and participates in  I've met a ton of people who 'get it'.  I've met countless individuals who give their time and/or resources to ensure that your daughter, your son, my daughter, Gina and even me live as little as time possible with T1D and for that time we do still have deal with it, we are as healthy as we can possibly be.  

Hang in there.  Right now, supporting your son is first priority.  Eventually,  try to figure out where you can find that positive in dealing with type 1.     Feel free to contact me - private message if you want - or reply here if you have questions.    

What your family has experienced is not very common, but it does happen.  

Genetics are part of it.  It's thought that both the mother and father must have the gene for type 1 diabetes in order for a child to have it.  But  even with identical twins there is only a 50% chance if one twin has type 1 diabetes that the other will too.  So that means there's more than just genetics that cause type 1 to develop.

Bad things don't just happen to people who make mistakes.  Misfortune is a part of life.  You didn't do anything wrong.  I'm sorry you're having to go through this as a family, but know that there is no reason your son and daughter can't have good lives with diabetes.  

I spent a lot of my life wishing there was a cure and trust me, I'll be the first one in line if one becomes available.  But after over 30 years with type 1, I also know that I'll be fine even without a cure.  Your son and daughter are going to be okay too.

hello "FatherofTwo"  just wanted to chime in and agree with what's been said.  For me, the anger of being diagnosed 30+ years ago started to go away when I realized getting T1D is not a punishment.

I have 4 siblings and I was the only one diagnosed.  there are more than 21 in the next circle of family and in 21 there is only my niece and myself.  Don't lose your mind trying to figure out the genetics, it's a loose correlation anyway.

I hope you stay on our site with all your experience you would surely be a great help to others - and we are here if you want to lean on us too.