Eyeing Hereditary Conditions
Fears & Choices

Concerns About Passing on Hereditary Conditions 

Parents have children all the time, both planned and unplanned. My readers may not have ever considered the challenges that parents who have been diagnosed with hereditary go through. 

In online forums and vision support groups, questions about the pros and cons of having children and passing on faulty genes crops up frequently. I’ve read comments by those who would never want to pass on their genes. There are others who say, “Don’t let your eye condition stop you from living your life and parenting children.” 

There are always those that find out after the fact. It’s really tough because there are so many factors to look at–the chances of it happening, if it’s a dominant trait in a parent or family, how the parent feels about his or her condition, or if it’s comes out of the blue, which is does in quite a few cases.

Immediate Family and My Diagnosis

When i was diagnosed with Retinitis Pigmentosa (RP), we couldn’t have been more shocked. The retinal specialist  said my condition was “autosomnal recessive,” which basic meant there was no trace of it in the family genes — neither in my immediate family nor in other generations or relatives. The specialist told me the chance of me inheriting this disease was 1 in 100,000 in this circumstance. What odds! I also learned both my parents had to both have been carriers of RP. In other situations, the statistics of passing on the defective gene is 1 in 4. 

Hereditary Conditions and Your Children

I dealt with the situation in ways  another parent with RP may not have had to. 

To begin with, I was married to a Middle Easterner so we had to discuss cultural aspects of having children and the possibility of me passing on an eye condition. My husband very blithely said, “We can handle anything. You’ll be a great mother!”  You know how it is in the honeymoon stage. you think your love is invincible and your partner is perfect.

Add Multiples and A Non-Related RP Condition into the Mix

Twins entered the mix for us–though that in itself was unusual since neither of us had a history of twins in the family. The doctor thought it could be due to conceiving  later in life (age 38). 

I developed a rare condition during pregnancy called pre-eclampsia, (toxemia) and lost the twins while carrying them. The second twin was born prematurely. We conceived again and at three months, we lost that baby too.  I always wondered what we would have done had they inherited my condition. But we never found out as we eventually divorced. 

Hereditary Eye Conditions

To see a list of inherited eye conditions, click on the following link. 
http://www.retina-international.org/patients/rare-eye-conditions

One Man’s Poem to His Children

I so admire the poem this vision advocate brings up as he shares his fears about passing the torch of Retinitis Pigmentosa on to his children. Though he agonizes over the possibility of that happening, he also brings up the strengths he has developed in his own life as a result of overcoming obstacles with his own condition. I find myself cheering and clasping onto his optimism as he reassures his children they have him as a successful role model. I like that he presents both sides of the issue, doesn’t gloss over the fears but also doesn’t let them hold him back. 

How well can you relate to Dave’s struggle? What stands out in his philosophy? 

You have just read “Eyeing Hereditary Diseases” by Amy L. Bovaird. Copyright October 2, 2017. 

Fiona Cummings

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4 thoughts on “Visually impaired Eyeing Hereditary Conditions

  • October 4, 2017 at 12:22 am
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    I do enjoy reading you Amy. I am very nearsighted. People always commented on my thick, thick glasses when I was a kid. I think that’s why I always have this fear of losing my vision. Since having cataract surgery, I can see very well. Still, the fear is there, somewhere. It must be so difficult to have a hereditary condition. My brother-in-law’s mother died of Huntington’s. He and my sister had genetic counselling before having children. My sister stressed over everything with their boys, worrying it might be the H. One time Michael had a limp. She worried. It turned out his big brother ran over his foot with a tricycle. My brother-in-law got the genetic test when it was available. He did not get his mother’s Huntington. Whew! Sorry, I’m long winded.

    Lily

  • October 4, 2017 at 12:58 am
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    Hi Lily,
    No, not long at all! It’s wonderful to know you’re interested. I have friends who worry about their children having symptoms of RP too? They watch them so carefully as well. As for me, I really i had cataract surgery too at a pretty early age as that is a side effect of RP. IT was fabulous at the start. I recovered so well! But as time went on I actually lost the vision in my left eye. I thought it was RP. BUT it turned out that having cataract surgery at a young age left some kind of deposit on my retina (like thick yellow leather, the specialist said). I had one really keen specialist who slowly used laser surgery and guess what? That thick covering was removed over 4 surgeries! It was a miracle! Not RP related. Just a side effect. wow! I was so blessed. I am writing a booklet about the whole thing!
    i think I’ve heard of Hungington’s. So so difficult! Gene counseling is very helpful though.
    Thanks so much for leaving your comment, Lily!

  • October 4, 2017 at 1:05 am
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    Amy.
    I can relate to this. Before I realized I couldn’t emotionally handle motherhood I worried about passing on mental illness to my own children. I didn’t want a child to struggle like I have.
    My mom for the longest time felt that it was her fault I have mental illness since her mom was mentally ill.
    With a inherited illness it’s a question you must ask before deciding to have children. A very good point you brought up in your blog.
    Excellent blog post.
    Aimee

  • October 4, 2017 at 1:15 am
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    Thank you, Aimee,
    yes, I think parents have to be on the same page about it and prepare themselves for any eventuality. I used to wonder if my children would have had RP but then it seemed like a waste of time since I would never have an answer. But it is debated hotly in our support group. It didn’t stop me but then again, I don’t know how I would have handled it if my children had lived and inherited it. I like to think I would guided them along the path. 🙂 You and your mom are so close. God bless you!
    Amy

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