Find a Health Professional

Despite the high incidence levels of these conditions, regrettably few health providers have had much experience with X and Y chromosome aneuploidy.  Consequently, locating well qualified, highly knowledgeable and caring health professionals represents a significant challenge to individuals and families affected by these conditions.  In order to help address this need, KS&A provides a free service in which you can view a list of health professionals recommended by others.  Also, if you have already registered as a member of KS&A, By Invitation Only, you can suggest the name of health professionals who you know and would recommend to others.

A recent survey conducted for KS&A by the Genetic Alliance found that 78% of the individuals interviewed - over three-fourths of the persons responding - expressed disappointment at how little the health professionals they had seen knew about these conditions and how they affect the lives of individuals born with one or more extra X and/or Y chromosome, and their families. 

• What Types of Health Professionals Do KS&A Members Use?



• Patient-to-Patient Recommendations of Well-Qualified Professionals
• Add a Provider You See to the List of Health Professionals



• View a List of Health Professionals Suggested by Other Members
• What If I Can’t Locate a Suitable Referral?

What Types of Health Professionals Do KS&A Members Use?

According to the survey conducted for KS&A by the Genetic Alliance, the most frequently mentioned types of health professionals whom KS&A members had consulted and said that they considered to be important, were the following -

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Patient-to-Patient Recommendations of Well-Qualified Professionals

In an effort to help address the difficulty many members have reported in locating qualified health providers, KS&A is adding a feature that will permit members to assist other members to locate health professionals that they respect. 

In a number of cases, these providers knew very little about these conditions until they had a patient bring it to their attention.  However, they took the time necessary to become familiar with the literature and the latest science, and today are able to impart this knowledge and clinical experience to new patients.  In other instances, these clinicians may have become intrigued with one or more of these conditions, conducted research studies, published articles and/or spoken at conferences. 

According to the NCHPEG/Genetic Alliance survey, 24% of the KS&A members responding rated as “Excellent” their most important provider’s ability to collaborate with them concerning ways to identify needed services, and 30% rated either as “Good” or “Excellent” their health provider’s understanding of the medical impact of the condition on them (or their affected family member). 

KS&A’s objective in providing the patient-to-patient recommendation feature is to help you find the best health providers to meet your needs. 

KS&A does not endorse any doctors, counselors or centers listed on this or other sites.  Moreover, if you have a medical emergency, please dial 911 or go to a hospital emergency room.

For all other circumstances, you may want to consider using this feature as a possible starting point for your search.  Finding a doctor or other health professional that is right for you is a personal process that can take time.  Be sure to find someone you feel you can speak with openly and honestly, and even if they don’t initially know much about your condition, who will take the time and have the interest to study and learn about it. 

As you search for a health care professional, keep in mind that you have a right to expect certain things, no matter who you are, what challenges you are facing or how much money you have. You have a right to:

• Privacy, confidentiality and respect
• Sensitivity to your needs and background
• An explanation of the treatment you are receiving and why
• Freedom to express yourself
• Freedom to find another professional if you aren’t satisfied.

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Listing a Health Professional

Have you found a health professional who has helped you...? 

If so, consider listing him or her in KS&A’s patient-to-patient database so that others may be able to find the help they are seeking. Click here to fill out a short questionnaire about the health professional(s) you recommend.

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Viewing a List of Health Professionals

Are you looking for a health provider...? 

If so, you may want to take a few minutes and view a list of health professionals recommended by others.  This service is free, and it is confidential.  You can search KS&A’s database by city, state, zip code or medical specialty.

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What If I Can’t Locate a Suitable Referral?

Okay, so you’ve tried to find someone through the patient-to-patient referrals, and you’ve asked your family doctor and everyone you know for the name of someone who has seen patients with X and/or Y chromosome variations, and no one has been able to give you a suitable referral… What do you do then?

You might consider going through the following this thought process…

Ask yourself whether you are looking for clincial and psychoeducational information regarding the following:

    1.     Behavior issues?

    2.     Cognitive development (e.g., thinking and reasoning) issues?

    3.     Emotional development and/or emotional issues?

    4.     Academic achievement or basic academic/educational knowledge?

If you want answers to these sorts of questions, you should seek out a good, qualified, certified, licensed clinical psychologist or neuropsychologist who works with children with neurodevelopmental differences.  While it would be ideal to find one of these professionals who has previously seen persons with X and Y chromosome differences - and in fact, they almost certainly have if they’ve been in practice for very long (even if the chromosomal variation was undiagnosed), licensed clinical psychologist or neuropsychologist who work with children with neurodevelopmental differences can assist you evaluate and address behaviors and cognitive issues.

Or, are you looking for answers to these questions:

    5.     Speech and language development?

    6.     Speech and/or articulation problems?

    7.     Lanugage understanding and use?

If you want to address these sorts of issues, you should locate a good, qualified, certified (CCC-SLP) and licensed speech-language pathologist.  Especially check into one who works with and has experiences evaluating and treating children with neurodevelopmental differences. If the problem pertains to expressive communication, also check to see if the speech-language pathologist works with oral motor problems such as verbal apraxia and dyspraxia of speech, which is found in SOME persons with X and Y chromosome variations.

Or, are you looking for the answers to these questions:

    8.     Hearing issues?

    9.     Listening issues?

    10.   Auditory sensitivity issues?

    11.   Understanidng spoken communciation issues?

Then you want to seek out a qualified, certified (CCC-A) and licensed audiologist who has the expertise and background in working with auditory processing disorders.  Professionals in this field generally focus on patients over the age of 7, so if you have a pre-natal or early diagnosis of the condition and believe one of these issues may be a factor for your child, then you should also focus on locating a professional who sees children below the USUAL age that audiologists test aduitory processing. 

Or, are you looking for the answers to these questions:

    12.   Motor issues?

    13.   Movement issues?

    14.   Balance issues?

    15.   Sensitivity issues (other than auditory)?

If you want answers to these sorts of questions, you should seek out a good, qualified, certified and licensed Occupational Therapist and, for some issues, Physical Therapist, who has a background in working with individuals with neurodevelopmental issues.

And finally, if you are looking for the answers to these questions:

    16.   Educational development?

    17.   Learning problems and development?

    18.   Learning problems and academic performance?

Then you can look into a clinical psychologist, a neuropsychologist, a school psychologist, or a special education consultant / evaluator / specialist who has experiences and knowledge and works with children with neurodevelopmental issues.  Some of these fields provide certification and licensure, and others regretably do not.  You may also want to check out the KS&A’s discussion of Educational Advocates for person-to-person referrals.

Some of the most knowledgeable and most widely published professionals today were once located by a parent or affected individual in exactly this manner.  That medical professional took an interest in the chromosomal variation, read and learned more about it, conducted their own research and later published on the topic.  So your efforts in speaking with these professionals may, in turn, produce an uncommonly knowledgeable professional within that sub-specialty who will inform their peers about X and Y chromosome variations as these occur within their discipline.  But moreover, if you have a good experience and like the professional you find in this manner, please consider listing him or her in KS&A’s patient-to-patient database so that others may be able to find the help they are seeking.

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