The Hearing Loss-Deafness Support Center

Every person is unique, but when you face a challenge like hearing loss or deafness, you are never alone. Countless men, women, and children have faced exactly the same diagnosis and have survived and thrived. The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge.

TSC has scoured the Web to gather together links to the very best hearing loss and deafness resources: articles, blogs, forums, and tools that can help you make better decisions and take action to overcome the range of challenges you're facing now.

As you’ll see, we always welcome your ideas and suggestions to make this hearing loss/deafness guide even more helpful to survivors like you.

JUST FOUND OUT

Survivors Say: Best Resources for Hearing Loss/Deafness

Survivors say these are the best resources for those who have just found out; check them out to learn more about your options:

• National Institute on Deafness and Other Communication Disorders
• MedlinePlus: Hearing Disorders and Deafness
• Mayoclinic.com: Hearing Loss

The Big Picture

There are two main types of hearing loss. One happens when your inner ear or auditory nerve is damaged. This type is permanent. The other kind happens when sound waves cannot reach your inner ear. Earwax build-up, fluid, or a punctured eardrum can cause it. Untreated, hearing problems can get worse. If you have trouble hearing, you can get help. Possible treatments include hearing aids, special training, certain medicines and surgery. This interactive tutorial from the Patient Education Institute at the National Institutes of Health can tell you more:

• Hearing Loss
• National Institute on Deafness and Other Communication Disorders: Ten Ways to Recognize Hearing Loss

Your Hearing Loss/Deafness

Before you can treat hearing loss you'll need to know what degree of loss has already occurred. You'll find more about diagnosing hearing loss (which is done by an audiologist) at this site:

American Speech-Language-Hearing Association: Hearing Assessment

Questions to Ask Your Doctor When You've Just Been Diagnosed

iVillage.com: Hearing Loss - Questions to Ask Your Doctor

Your World

Don't be surprised if you're feeling a mix of powerful, and maybe even overwhelming, emotions right now. Anger, worry, and depression are common responses to receiving the news that you're losing or have lost your hearing. Here's some good advice for weathering this difficult time:

• Hearing Loss Association of California: The Emotional Side of Hearing Loss
• Hearing Loss Association of California: Handling Difficult Situations

Hearing Loss / Deafness Myths

• "It's only in one ear; my other ear will be fine."
  
• “Hearing loss only affects older people."
  
• “Hearing loss or deafness can instantly be fixed with surgery."
  

These myths and others, along with the truth about each, can be found at Betterhearing.corg: Common Myths About Hearing Loss.

Information and Recommended Links for Survivors

Survivors say these are the best guides for living with hearing loss or deafness; check them out to learn more about your options:

• WebMD.com: Living With Hearing Loss A complete guide to living with hearing loss, including information on assisted listening devices and hearing aids, symptoms, and other treatment options.
• Deaf.com, "Your gateway to the deaf community"
• About.com: Deafness /Hard of Hearing Comprehensive information about deafness, covering treatment, lifestyle and career.
• National Association of the Deaf An excellent place to start if you have questions about your legal rights or want to get involved in advocacy for the deaf community.
• Hearing Loss Association of America This site can help you find support (online and offline) and health-care professionals.
• NIDCD: Commmunication Considerations of Parents of Deaf and Hard-of-Hearing Children

Types of Treatment

Surgery

Children and adults who are deaf or severely hard-of-hearing can be fitted for cochlear implants, which is surgically inserted. Here's more on these implants from the National Institute on Deafness and Other Communication Disorders (NIDCD):

Cochlear Implants

Assisted Listening Devices

Hearing aids are external devices that make it easier to hear and are a very common treatment for hearing loss:

NIDCD: Hearing Aids

Creating a Support Circle

• Set up your TSC survivor profile.
• Join support groups of other survivors or start your own.
• Interact and provide updates.

Health-care Providers Who Can Help

Otologists are physicians who help with problems of the ear. Audiologists can help with speech and hearing problems as well.

Resources to Find Doctors

• American Speech-Language-Hearing Association: Find a Professional: Online Directory of Audiology and Speech-Language Pathology Programs
  
• American Academy of Audiology: Find an Audiologist
• Healthgrades.com: Otology / Neurotology - Find Local Otologists / Neurotologists
• American Hearing Research Foundation - List of US universities and university-affiliated hospitals funded by the Foundation

Books Survivors Recommend

• Living with Hearing Loss by Marcia B. Dugan
• Odyssey of Hearing Loss: Tales of Triumph by Michael A. Harvey
• On the Job with Hearing Loss: Hidden Challenges Successful Solutions by Rebecca A. Morris

Dealing with Hearing Loss / Deafness: Information for Co-Survivors

How You Can Help

• Learn sign language if your survivor is deaf.
• Talk and share your experiences with others, including other co-survivors.
• Create a TSC co-survivor profile and participate in the community.

What to Say

• Be supportive.
• Help other co-survivors understand they are not alone.
• Reassure your survivor that their life has meaning beyond being deaf or hard-of-hearing.

What Not to Say

• Don't be negative.
• Don't trivialize the survivor's concerns.
• Don't focus on deafness as the defining feature of the survivor's life.

Things You Can Do for a Survivor Every Day

• Be a friend.
• Collect information from reliable sources on deafness or hearing loss.
• Empathize and share your own experiences with a health crisis or other hardship.

How to Build a Support Network

• Set up your TSC co-survivor profile.
  
• Create a support group for your friend or family member.
  
• Interact and provide updates on how your loved one is doing.

Recovery and Recurrence

If your hearing loss worsens, it may be difficult not to feel discouraged. But remember that many have walked this path before you and you yourself are a survivor who has made it a long way on your journey already: You know now how to find medical help and emotional support to help you get through this stage as well. Start by talking to your doctor to re-evaluate your treatment plan. This  University of Rochester Medical Center page discusses some of the more "high-tech" options for treating hearing loss:

High-Tech Solutions for Hearing Loss

If you haven't lost your hearing completely you'll want to do all you can to preserve the hearing you do:

• National Institute for Occupational Safety and Health: Noise and Hearing Loss Prevention
• WebMD: Hearing Loss Prevention

Hearing Loss

In the worst-case scenario hearing loss can degenerate to complete deafness. This can be more difficult for those who have experienced gradual hearing loss than those who were born deaf. There are many options for the deaf, including learning sign language and lip-reading (co-survivors can learn sign language as well). Here are some resources for the newly deaf and for parents of a deaf newborn:

• Alldeaf.com: Newly Deaf and Struggling
• About.com: Deafness/Hard of Hearing Forums
• Deafspot.net
• NIDCD: American Sign Language
• NIDCD: Communication Considerations for Parents of Deaf and Hard-of-Hearing Children