An information and support resource for families with children, teens and young adults who have a DSD
Contributions to AIS/DSD Parent email group
- The meaning of peer support
- Adapting to the diagnosis and coming to terms with it
- The process of sharing information with your child - what to tell, when to tell and how to tell
- Teaching your child about privacy, without attaching 'shame' or 'wrong'
- Questions about the care our children receive
- Breaking down parental isolation
- Thoughts on moving from paediatric to adult care, and on intimate relationships
- Gender issues? What gender issues?
- Changing the image of DSD
The meaning of peer support
A typical welcome to a new parent member in an email support group:
'Welcome to the group. You're in a good place with wonderful, supportive people. Fourteen years ago, my daughter was born and like you there was nowhere to turn. I found this group last year and this has been the best thing since sliced bread. The support, love and guidance cannot be matched anywhere. You will feel like you're on a roller coaster, but stay focused to your precious gift, because everyone will tell you it's going to work out. Whatever your questions, concerns and emotional needs this wonderful group of people will help you with them.'
I'm so glad you found our group. So many parents seem to suffer alone, not knowing we exist. I think you'll feel an upward movement now that you can talk to others and sort through your feelings and fact-finding. It's not the worst thing in the world and we're all proof of that.
(new Winter 2014-2015)
Often people who we come across through school, hospital, dentist, etc. might say something small that is meant in the nicest way, but which really hurts – like a pin prick.
Our experience is that the more relaxed as a parent and confident in your child’s medical care and the better supported in terms of social support (friends, family, peer support) you are, the less you will hear and pick-up on these things, and the less hurtful they become…So the other day my baby broke her leg because my sisters dog knocked her down.:-( As we were having x-rays taken they put one of those guards over he pelvis, she did not want it on, and the technician said, " oh no honey you have to keep that on because your mommy wants grand babies someday." :-( Of course this woman does not know of Elza’s condition but none the less, in what was already a heart breaking situation having her scream in pain because of her leg, I felt even more sadness. It's just little things like that, that tug at my heart strings! She is brave and a tough cookie as always and managing to still enjoy herself, even with the pink cast she picked out!
A parent replies to the message of a new mother (with baby's diagnosis CAIS or PAIS) :
Nothing is threatening your beautiful healthy baby's life so relax and take your time absorbing this news. The doctors can act as though it's the end of the world and that some action needs to be taken. There's really nothing you need be doing now except enjoying your beautiful baby. Get the diagnosis pinned down and then set a good example for the docs by remaining calm and treating it as what it is... a wondrous variation in nature. You've already shown that you're ready to be a fantastic advocate for you daughter. There's plenty of time to contemplate the best path for your family. This group can give you access to all the information you need. Everything will be fine.
The mother of a newly diagnosed 8 year old girl writes about her feelings on the diagnosis:
I am at a loss as to what I am feeling lately, I think I am going through the anger stage. I have had a while now to digest things and thought I was doing good with all of this, but I am now angry about what my little girl has gone through and the years to come. I also am very confused, I am wanting to sit down with her and talk about some of the information we have been given, not full details as she is only 8 ( 9 soon!) but I am never finding the right time to do it, and my husband wants to be involved in the discussion, but how do you even begin.
She is so smart and pretty and full of life and big bright smiles and I hate to think that her world may crash down around her. Like I said I am in the angry stage, I am so mad that this has happened to such a fantastic little girl and that she will have to deal with this and I am hoping that she will continue to be just her. I am mad that I can't do anything to make it go away, I am mad that there are so many ignorant people in the world that love to use differences as a weapon to hurt others. Not sure why this is how I am feeling but have been told it is just a step of grieving. I am anxious more than ever lately and hate feeling this way. The love of a mother for her children is so great and I wish that everything is going to be ok.
An experienced parent replies:
Oh my goodness, I carried a lot of anger over the years. Especially before I had anyone else to talk to. It is OK to feel this way. No parent wants her child to have to deal with something that is potentially hurtful or limiting. You are not necessarily going to find a perfect time to sit down and talk- it is just going to come up naturally as part of conversation some time. And with all of the love you have for your girl, somehow the words will come to you, and you will let her know how she will cherish her children as you cherish her, and that she can do anything she wants with her life because she has so many special qualities. Your husband may or may not be there, but this is a continuing message that comes from both of you and from your whole family, and there is no way to mess it up because you communicate it every day that you are together. We in this family email circle are here to hear rants and absorb grief and anger- everyone has been through it. It takes a lot of energy to hold on to anger, and one day it will slip away. In the meantime, let it out but don't let it take over your life. Because everything is going to be OK.
Another parent of young adult replies:
I had the benefit of knowing from the time my CAIS daughter was two weeks old. Still, I do remember feeling quite unsettled when she was turning nine. That is about the time our pediatrician started making the case that we should establish a relationship with a pediatric endocrinologist and also the point when I started feeling like the carefree days would soon be coming to a close. The other girls, especially those with older sisters, start to whisper about periods and other early adolescent concerns. Maybe there is some talking about liking boys at the little girl sleep overs. The winds of change are in the air. Instead of looking ahead with confidence we moms of AISers look ahead with a sense of impending doom. So many questions and concerns about how our little girls will handle what should be this magical coming of age time in their lives. I think it's so typical for all of us to be just so sad and at times angry too.
And why not? It's not an easy set of cards we have been dealt after all. I remember looking at my very carefree, enthusiastic, well-adjusted kid wishing to avoid the next stage forever. The secrecy magnifies everything, making it all seem so much more ominous. I found it really normalized things for me to finally be able to talk to my two closest friends. People I shared a history and local culture with who also knew and loved my daughter. Shining a little light on the situation by talking is like the difference between how you ruminate fear in the middle of the night or waking up after a good night's sleep to how things always look better in the morning.
Please trust me when I tell you I don't think there is one of us parents who hasn't discovered that our daughters were much more resilient than we ever could have imagined before the disclosure talk. Remember that anything you tell your child with confidence she will feel confident and less fearful about as well. Like the very wise Fred Rogers always said.. "Anything that is mentionable is Manageable". You know what is true ! And it is also true that it will be okay. More than okay. Things will be great again'.
The mother of a three year old CAIS girl writes this messages to the group, titled 'First Steps':
As I picked my daughter up to take her back to bed for the 11th time last night she looked at me and said "Mom, I'm always in your heart." I was really touched by this declaration, though I wasn't quite sure who had told her this fact. I said "Yes you are in my heart, and I'm always in yours". "Uh-huh" she nodded. To take advantage of a good teaching moment I quickly said "Jesus lives in your heart too." "Yes," she said "and he's going to go down... in my belly... and he's going to come out a baby." She said this very animatedly, showing how her tummy would get bigger and bigger. "Well," I said, stalling. I wasn't prepared for this at all. Three? Three was too young to be thinking about having babies.
"Well," I said, starting again. "No, baby. Not everyone has babies in their tummies." I started to pull on her pyjamas. "There are a lot of little babies out there who need mommies, and you're going to be able to adopt one someday." "Oh," she said with her wide blue eyes. "Can I get a little kitty too?" I hesitated. "Sure... a kitty... We can get one of those too."
At 10:45pm that night the world shifted for me. Our journey to understanding began when I least expected it. I looked in a little bit later that night. Her angelic face was smooth and innocent. I wished I could protect her forever. It was ironic to feel how moved I was, knowing how unaware she was. I hope I can keep it that simple... at least for now. Isn't that the point to all of these moments? We worry. I'll worry.... So she doesn't have to. And in the meantime... I'll pray for the courage to choose the right path that will be easiest for her, and pray for the strength to go back when I've made a wrong turn. I'll pray to be her pillar, so she can grow so much stronger than I've ever dreamed of becoming.
Thanks, everyone, for making this journey with us.
The parent of a recently diagnosed 16 year old CAIS girl writes to the group about how her daughter was doing after doctors shared with her details of her genetic make-up:
'This morning went extremely well. The genetic specialist and genetic counsellor explained things A LOT better than [other doctors at another hospital] did with my husband and I. My daughter was completely fine with all of it. She understood everything they were saying and asked a few questions. I'm sure she will have more questions as they come up, but for now she is doing really well. I called her over lunch and asked her how she was doing and if she had thought of any questions.... her response was... what's the big deal? Hopefully that is a sign of a trend to come! '
Another member of the group responds:
'That's really great news. Sounds like you have a very level-headed daughter.
It's interesting that in fact I have heard very similar stories from others (both parents and girls or women); the clarification of the genetic details and even the testes (not sure quite what they told your daughter) has often been met with a response along the lines of "thank you for explaining; I'm glad it wasn't something really dangerous."
Anyway, I think we all agree that sharing the factual information in a truthful way is ultimately the best for everyone, including the affected child/teen/person. '
The mother of a 9 year old worries about what to tell her daughter, how to tell, when to tell..., and the parent of a teen responds:
9 is a good age. Believe it or not, the school my [CAIS] daughter is in had lessons on ovaries, testes and sex chromosomes starting in 4th grade. It's better for her to know BEFORE those lessons so you can teach her that "you'll hear this in school because that's a basic lesson that the school has to teach, but really, there are some girls with body parts that you'd think belong to a boy but they're not and some boys have body parts that you'd think belong to a girl but they're in the boy, and that's okay, yada, yada.
Eventually she'll ask what she has; or it will be easier to get to that point when you have illustrated the "options" people have. My daughter was 9 when I told her she had testes. She asked, "well, what do I have?". She always assumed she had ovaries because she's a girl. A doctor told me to refer to her big brother's testes and her sister's ovaries and I didn't mention her body parts. She was smart though and asked. We'd already covered the lessons (that most girls have ovaries and most boys have testes but not always...). She didn't remember the actual conversation but did retain the information. It is never just one lesson, it's many talks, and you're shaping her to think a certain way so that when the information is delivered to her, it doesn't feel shocking or new, it's fluent.
It gets easier in a lot of ways after it's all out on the table, which is ironic, because that's what doctors and parents feared the most in the past. It's just nice to have straight forth discussions as they age. It starts out preparatory, then tender, careful, then more detailed, then more frank, and then you reach high school and it's all out there and very little is taboo. Age appropriateness is hard with all of this and especially when schools hit the material so early. But talk with her definitely before the periods in her peers begin. That way she's prepared and she knows, it's not a sucker punch.
I'm in the early dating stage and my daughter told me a boy with his own medical issue on the basketball team is rumoured to like her. And how proud am I that my daughter isn't the type to reject a guy with a support group of his own?!!! Haha.
An experienced parent welcomes and reassures a new parent:
Welcome to our group! .I have always believed in being honest with my daughters and prepared them gradually with information that they could understand as they got older as other parents are describing. And the words did just come even though I had agonized over them. The conversations you will be having are variations of conversations you would be having with your daughter anyway about how families are made and how people are all different and special. You and she will be able to meet other families along the way so she will know other children, young adults, and grown-ups who are like her. Growing up with wonderful role models makes all the difference for our children to expect that they will have marvellous lives that are just slightly different from some of their friends' lives.
A mother responds to a question about how to tell a child the truth about their condition, without hurting her:
Instead of thinking of truth as "hurting" her, remember that in the long run, you really are empowering her and equipping her for her future. It's no picnic for mom, that's for sure, but it must be done and who else to do it but one who will control the lesson in the gentlest manner???
What follows is a series of posts between Maggie and some other parents. The title of the post was ‘A good day for us!’:
We drove two hours from home to see our great endo and the urologist she recommended.
The good news:
- Our very small 7 year old son (PAIS) has naturally started growing at a faster rate! He is tiny...so we are so excited!
- Anuj (PAIS-10)had her first real genital exam (more than just a quick peek down her undies) since she was 5 - and handled it AMAZINGLY. We really needed someone to take a look since she has been having some post-surgery issues (surgery done at age 1, but some scar tissue issues since about age 6). I am proud of both of us :) Anuj and I talked ahead of time about how she wanted it to go (she would do all the necessary touching so our urologist could see what he needed to see) and it went just as planned. She was a bit shy and embarrassed (of course), but came away feeling good.
And we just now had a great conversation about puberty, and hormones, and finding her gonads (and what are they? what do they do?)...phew! I feel like we have made some major strides today to her knowing what she needs to know, and feeling okay...she is mostly just mad about our decision that we need to start doing blood levels every six months to track her onset of puberty. She hates those blood draws!
One mother replies:
Congrats on wonderful appointments! It sounds like you went through what could have been a difficult appointment for Anuj with ease. Good job, mom!
Another parent asks:
This is great news, Maggie! How did you talk to her about doing the touching herself during the exam? Some exams are necessary, and this sounds like a great idea. Did you stay with her during the exam?
I started talking with her over the weekend about our Weds appt., and told her that this time it would be important for our urologist to really take a good look at how her vagina is changing and growing. She was worried about it -but knew it was important since she has had some stinging and itching that bothers her. I reminded her that most women have yearly examinations of their vaginas, and asked her if she had any questions since I have had lots of them. She asked if it would hurt...and that was her only question. And then I said something like, "it's not an easy thing for me to do every year, because my vagina is a private part of me, but I know it's important to make sure I stay healthy."
I asked her if there was anything that would make her feel more comfortable, and she said that she didn't want him to touch her there, so then we came up with the idea of her being the one to touch herself to position herself so he could see what he needed to see. She liked the idea much better. I did stay in the room with her, and helped her to know how to position herself, etc. She was still embarrassed, but it was much better than it would have been if she was just laying back and he was touching her. He was really kind and respectful. Before we told him what we wanted to do, his plan was going to be to have the nurse position her, etc - so he already had some good awareness that a male doctor touching a girl-child's vagina can be especially hard for the kiddo.
Nice to get over this hurdle! :)
Another mother responds:
I am so chuffed for all of you, especially Anuj - it must have given her a sense of control that will, I hope, stay with her for a long time. In a previous message you suggested she knows about the xy and the gonads....blimey....can you tell us a bit more about how you approached that. I will have to have a chat about gonads soon. Otherwise Lily is doing well. She is doing her timetables as we speak.
Love to all your family,
Times tables! Anuj is working on those too...fun, fun, fun! ;) Any tips to share? We should have another list serve about learning times tables...
So, in terms of the gonads and XY...it has been pretty recent...but came out a natural extension of earlier conversations about the ways her body is different and similar to girls who don't have a DSD...she understands chromosomes VERY basically as a part of "the map" that gives our body guidance about how to grow...and we have previously talked with her about hormones (talked about different kinds of "juices" when she was littler...and that we all - boys and girls - have some of each kind of juice "red" and "purple" that helps us grow...and that she and some other girls with DSDs have more of a certain kind of juice ("purple") than many girls do...). I got some great advice from Dr. Tom Mazur back a few years that we could approach it this way... These days she knows the words testosterone and estrogen.
More recently we talked about how her map ("XY chromosomes") has a path that can lead to someone being a boy, but it also has a path that many girls with DSDs go on that leads to being a girl. The gonads we explained as things that can become ovaries or testicles...and in many girls with DSDs they don't develop fully into either...so they can be helpful in growing, but at some point they can stop being helpful, and we will need to take them out.
She is a bit worried about "needing to take them out" since it will mean a surgery. She also wanted reassurance that she would not "turn into a boy". So nice to be able to reassure her of that in this day and age, and with the excellent care we are receiving.
It's ALOT for her to take in...and I think that she will understand it at ever deepening levels as time goes by...
Hope that helps - great to hear that Lily is doing well. Love to you and your family!
Another parent [of a 3 year old girl with CAIS] responds:
Times tables... I can help with that :) Big Brainz has free game out there called Times Attack... the kids at school like it. You can also get some catchy times tables tunes with all the tricks. Plus... there's the hand trick for the 9's. All those help....
Thanks ! I really need some help with this...and the catchy tunes sounds right up her alley...always singing!
The dreaded timetables - sometimes I think my daughter when she is grown-up will remember me as an awful mum ONLY on the basis of the amount of times we have fallen out over her having to do her homework and practice times tables!!!! And she is only 9!
How I would have liked to have access to your experience all those years ago (I would have read it again and again and again); I would have felt so much more in control. Another question: how did you explain to Anuj that this is private information? I find this hard: on the one hand we want to be open to our children (nobody wants to go back to how it was surely), but on the other hand, with kids knowing younger and younger that their bodies are different, how do we teach them about privacy... And is it realistic to expect our kids to keep this private?
Lots of love,
In terms of privacy, Anuj has never wanted to share with others about her DSD, so we haven't had to advise about who to share with...and I even feel that I may have overstepped her comfort level (before I knew what it was) at times...She really wants just immediate family, grandparents, and some few close friends to know. (I wonder if this may change after she meets some other kids with DSDs at the conference next year?)
Best wishes, Maggie
A mother of a young PAIS girl writes:
Last week, I picked my daughter up from a sleepover. The mum who hosted it tells me that the girls had a lovely time, and they also had a very long bubble bath! Unbeknownst to her, my heart missed a few beats. My daughter has a larger than usual clitoris, and I have always encouraged her, and her younger siblings, to think of 'private bits' as exactly that: 'private'. When I ask my daughter later about whether her friend then knows that she looks different, my daughter says: 'yeah, of course, since we did swimming in year 4'.
I know somewhere in that message there is a very positive notion, the idea that her difference does not matter to her, nor that it has so far to her friends. But I realise that I need to protect her from a future in which this difference might matter, and the knowledge of it by others, might be used against her, before she is ready and able to deal with it adequately.
A few days later, whilst on a mummy/daughter shopping trip, I ask her if it is OK to come back to the conversation about having a bath with friends, and swimming...you see, I explain to her... do you remember how easy it was to fall out with your best friend a few weeks ago...?
Well, mummy and daddy want you to know that later, when you are twelve, thirteen, a bit older maybe, sometimes friends will start to use being different in such a way as to hurt you... they might say: I don't like you because you have red hair, or I don't like you because you are too thin, or I don't like you because you are too slow, or I don't like you because you always have top marks in class, or I don't like you because you have two big front teeth... at that point my daughter feels her teeth....
And I continue: they might say I don't like you because your mum comes from a different country....
My daughter turns to me and says: but that would be a racist thing to say! I explain to her that yes, that would be racist, and it would be very unkind, because where I come from really does not change the kind of good friend you are ... but if friends you have fallen out with think they can hurt you with that information, they might say such silly things.
That is why mummy and daddy would prefer it if your friends don't learn anymore about you looking a bit different, because we don't want your friends to say to you: I don't like you because your private bits look different...precisely because, like where mummy comes from, it really does not matter.
OK, she says. And then we decide where to go for lunch.
A parent asks advice on how to deal on a day-to-day basis with different looking genitalia. A mother responds:
My daughter, who is 4, also has a quite noticeably enlarged clitoris. It has worked well for me to lightly/casually tell people who may need to change her diaper (babysitters or pre-school) that they may notice that she looks a bit different down there, but that she was born that way, and she is healthy and fine. It is also good for my daughter to hear me tell these people in such a positive, light way, too. Good luck - It took me a little while to feel so okay with this approach - but it really works! I have never had a weird response.
I also have had to deal with intrusive medical practitioners - one weekend fill-in pediatrician start to question me about my daughter's DSD (whether I thought she may grow up to be a boy or girl...blah, blah,blah!)... when we were there for an ear infection(!!) -and at first I started to respond to his questions, but then realized that it was not related or even his business, and reminded him that I was there for her ear infection, and that I consult with her regular paediatrician about her DSD care. Still gets my hackles up...insensitive guy! I think you should feel free to tell doctors who are not involved in your daughter's DSD-specific care that you are not there to talk about her DSD. If they are the appointed people to have the details of her care so far, it is right there for them to read in her file!
Thanks for wanting to help, I am up in Canada, and there seems to be no-one else going through this here LOL. I asked straight out for a number of patients they are seeing with CAIS, twice, and still have not got that answer either. I am wondering if they are in unchartered waters. We are not scheduled to see anyone until Feb-March. Is this typical too? A once a year visit? At this time they will do an ultrasound to check the gonads to make sure they are not containing any growth.
I look at this as just getting a new job like a big job with a lot of responsibility, but no one is training me, and I am doing all of the research and training on my own, but I am in need of some support, like a manual or something. Just feeling a little lost and can't quit this job, or look for a new one, this is it, my life job, to take care of my girl. By the way the pay is darn good, her smile is all the pay I need.
The mum of a young girl with a diagnosis 'most similar to PAIS' talks about a common experience of removing ourselves from our friends, worrying about who we can share the diagnosis of our child with
In the early days after my daughter was born, we made the decision to tell as few people as possible ... and to tell even them, as little as possible. I didn't want anyone to look at me with pity ... I wanted people to celebrate this tiny new baby. I didn't want anyone to look at her differently ... or to look at her with pity.
As my daughter has grown up and people have fallen in love with her for exactly who she is ... I have felt that certain friends could be trusted with this truth about her without it changing how they saw her as a person.
One friend cried with me as she herself mourned the loss that I mourn for my girl ... but she didn't look at me with pity and it has not changed how she treats her.
Another friend who is a nurse, required only a little explanation of my daughter's condition because of her background ... she looked at me as I explained, got a big GRIN on her face and said, "Well, we all know our kids are special ... but yours is really special! She's a strong beautiful girl ... she'll be an amazing woman someday who will teach us all about embracing differences and being true to yourself."
There wasn't an ounce of pity ... she actually celebrated my child's difference ... and made me see my own reactions in such a different way ... I have always embraced my daughter's difference, but this friend reminded me to not see it as an obstacle, but as a miracle in its own right!
Maybe I've been looking at this all wrong ...
A parent of two CAIS girls writes:
I did share with family and close friends from the beginning because the secret was just too much to bear and I needed the support of people I trusted
A mother of a young teen asked when is the right time for her daughter to be seen by a gynaecologist. The parent of two young adults replies:
'There is no "right" time to start going to a gynecologist. The transition to adult care can start with the onset of puberty in early adolescence with discussions about why women in general go to gynecologists- because they are experts in adult women's health issues. Gynecologists do checkups on every woman for a variety if reasons: to make sure the outer genitalia and vagina are healthy, to monitor hormone balance, which can affect many different organ systems, to examine the uterus and ovaries, to discuss safe and healthy sex, to prepare for starting a family, and for contraception. Although girls who have a DSD may not have typical internal reproductive organs, in most ways they have the same concerns. They can get yeast infections and UTI's, and imbalances of hormones can affect their well-being. All girls need to be prepared for becoming sexually active by learning about safer sex. Typical girls will need to learn about how different kinds of contraception may affect their bodies. Girls who have a DSD may need to prepare for intercourse with some stretching of the vagina. It is their own private decision and completely up to them to decide when they are ready for stretching, but a gynecologist can help them make their best choices about it. Some girls want to start in advance of a sexual relationship, while other girls are more comfortable dilating after there has been some physical intimacy. If they already have a relationship with a gynecologist, it will be easier for them to discuss these issues.
If a younger girl really seems stressed about this, you can tell her that she will probably want to have her own gynecologist by the time she is 18, leaving home, or going to college. You might want to check out the gyne yourself before taking your daughter to see how she/he responds to your description of the situation, what her manner is like, and how she relates to young women. You can tell your daughter about your "interview" and that you would like her to meet this doctor just to say hi and ask questions. In the mean time, there is no reason to abruptly stop seeing the pediatric endo if your daughter is comfortable. A crossover period with a couple of visits to both doctors might be good to help the transition.
The older girls can also educate the young girls about this topic. Perhaps we should have some separate sessions for the younger teens and young adults at the next support group meeting?
My daughters both became sexually active without a problem. They knew I was available to help them if necessary, but that I would respect their privacy. It was a tough time for me because I wanted them to grow up and have normal relationships, but also to protect them from bad experiences. I am probably the only mom in America who was elated when her daughters started having sex.
A mother of a teen writes:
On another subject. Has anyone read the research about androgens and higher math ability?
I would love to do an informal survey of parents to see practically speaking, how is math for our girls. My daughter is fine with computation, but struggles with higher concepts. This matches some recent stuff I've read about pre-natal androgens followed by a surge of androgens in males at puberty accounting for the higher boy/girl ratio in enrolment in calculus, etc.
Supposedly with arithmetic/ computation there is little difference between the sexes but after puberty (the second surge) the bell curve changes with boys doing consistently better (of course not all boys better than all girls) but when looking at the big numbers, graphs etc. I wonder where this leaves especially complete AIS girls.
If Germaine Greer would like to take a look at the back bumper of my Ford since my daughter has been driving, I'll bet I could convince even her that there is a link between androgens and spatial ability.
My little girl (CAIS) is doing well and has now decided she wants to be a "star" when she grows up. She wants to dance, wear a pink tutu, and sing in a microphone. She is definitely into anything pink. (By the way, do they make pink food coloring for veggies? I think it would work!) If it isn't jingle bells she's singing it's "shake, shake, shake.... shake your booty..."with the really intense concentration it takes for a two-year-old to try and control her muscles and shake it. Meanwhile, she has to turn her head as far backward as possible to try and watch the whole process. I tell you, being a star and keeping your balance with all this work can be tough!
From the mother of a little girl as she was preparing for her daughter to undergo testing for 5-ARD:
[…] Sophie plays soccer like a brute on Saturdays and dances like a graceful ballerina on Tuesdays ... she has 2 best friends, one a boy and one a girl ... she's just Sophie, who cares what gender she is, she's 4, she is who she is.
[Sophie’s diagnosis has now been confirmed as 5-ARD, a few days after a 1 year old girl’s ‘most similar to PAIS’ diagnosis got confirmed as 5-ARD as well]
In response to a discussion about informing families of a possible genetic mutation, a parent writes:
Can I please ask any of you who can and who is aware of a hereditary link to reach out to possibly affected (or possibly carrier) family members. I discovered within the space of a few hours that not only had my child suspected PAIS, but that I had two family members with this condition, and that another member of the family, who I went to school with, did get tested before starting her family. My anger about what I saw as a betrayal was just as enormous as my worry at how my child and we would adjust to such a diagnosis, and lasted probably twice as long.
I understand that this is difficult - but reaching out within affected families surely has to be an essential step in overcoming society's inability to understand these conditions. How different would it have been for me if rather than being told about how shame and stigma stopped family members talk about this, I would have been told about' the genetic mutation and that for reasons of privacy we don't discuss this out with the family'.
I appreciate that everyone's circumstances are different - and ultimately we individually have to decide what is best for our own nuclear family, but I cannot help but think that affected families themselves perpetuate stigma and shame, and should receive every possible support to break that circle.
Some parents express a wish that celebrities with these conditions would step forward to be role-models for our children and to demonstrate that dsd is all around us, and nothing to be scared about or ashamed of. Another parent responds:
'I agree with you on the 'power' of celebrities, but feel that they deserve privacy just as much as I crave and desire it for my daughter. There are so many little and big things that we ourselves, this group of parents can do, in altering the image of DSD.
Let's attract celebrities who have nothing to do with these conditions but who agree that difference is OK, difference is cool. Let's present ourselves better through stories that reflect modern medical care and modern parenting.
What if we could show the rest of the world a glimpse of our shared experiences? Let's seek a celebrity (Oprah!! or lots of celebrities) willing to write about accepting difference...Let's allow media to quote from it - if we don't 'feed the press' they will only come up with interviewing those we do not wish to represent us, or dig up out-dated representations of life with DSD.'
My daughter [early twenties, with CAIS] sent me this picture the other day of a bathroom she had ran across [Pike Place, Seattle], asking me “where do I go?” Of course this was all said in good fun, she didn’t really have an identity crisis right at that moment. ☺
‘Oh my gosh - only your daughter would come across this. THIS is a classic. A keepsake for sure. Thanks for sharing. ‘
‘LOL!!!!! That's funny!! Gotta love that girl!! :-)
Thanks for sharing with us!’
‘That picture made my day, I would love to see the owners face if one of our girls went to them and asked if there was another bathroom for women only but XY.’
‘Or if you're xo or xxy? Sorry, no potty for you. It's funny that we are LAUGHING at it!!!!’
There is often a discussion about the insensitive portrayal of these conditions in popular media. A mother gives her view on an episode of the American series Private Practice:
'You know it really wasn't bad. It was really pretty respectful. Not realistic in really showing how devastating a dsd is for the parents to cope with at first but not insulting and it brought out some good concepts for the public to grasp. Our children are healthy. Being different is not the end of the world. Doctors should respect a person's right to self determination even if that person is different in a way that frightens some people, like the dad in the show. I really thought for what is really a doctors' version of the sleep-with-everyone-you-know-show "Friends" they did a good job. We can go to bed hopeful. Score one for our side! '