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Living with Osteopetrosis. How to live with Osteopetrosis?

Can you be happy living with Osteopetrosis? What do you have to do to be happy with Osteopetrosis? Living with Osteopetrosis can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Osteopetrosis

Living with Osteopetrosis

Osteopetrosis is a rare genetic disorder that affects the bones, causing them to become overly dense and prone to fractures. Living with osteopetrosis can present various challenges, but with proper management and support, individuals can lead fulfilling lives. Here are some strategies to help navigate life with osteopetrosis:



1. Regular Medical Care


It is crucial to establish a strong relationship with a knowledgeable healthcare team, including doctors specializing in metabolic bone disorders. Regular check-ups, bone density scans, and monitoring of symptoms are essential to manage the condition effectively.



2. Physical Activity


Engaging in appropriate physical activity can help maintain bone strength and overall health. However, it is important to consult with a healthcare professional to determine the most suitable exercises for your specific condition. Low-impact activities like swimming, walking, and gentle stretching are generally recommended.



3. Assistive Devices


Depending on the severity of osteopetrosis, assistive devices such as canes, walkers, or wheelchairs may be necessary to aid mobility and reduce the risk of falls or fractures. Working with an occupational therapist can help identify and obtain the most appropriate assistive devices.



4. Pain Management


Osteopetrosis can cause chronic pain due to fractures or nerve compression. Effective pain management strategies may include medications prescribed by your healthcare team, physical therapy, heat or cold therapy, and relaxation techniques such as deep breathing or meditation.



5. Nutritional Considerations


A well-balanced diet rich in calcium, vitamin D, and other essential nutrients is crucial for maintaining bone health. Your healthcare team can provide guidance on appropriate dietary choices and may recommend supplements if necessary.



6. Emotional Support


Living with a chronic condition like osteopetrosis can be emotionally challenging. Seeking support from friends, family, or support groups can provide a valuable outlet for sharing experiences and coping strategies. Additionally, counseling or therapy can help manage any emotional distress that may arise.



7. Fall Prevention


Due to the increased risk of fractures, implementing fall prevention measures is crucial. This may include removing hazards in the home, installing grab bars or handrails, using non-slip mats, and ensuring proper lighting. Physical therapy can also help improve balance and coordination.



8. Genetic Counseling


If you have osteopetrosis, it is important to consider genetic counseling before planning a family. A genetic counselor can provide information about the inheritance pattern and the likelihood of passing the condition to future children.



Remember, every individual's experience with osteopetrosis is unique, so it is important to work closely with your healthcare team to develop a personalized management plan. By taking proactive steps to manage the condition and seeking appropriate support, individuals with osteopetrosis can lead fulfilling lives.


Diseasemaps
8 answers
Lots of pain killers. Have the hope to find an early cure. Want to live!!!! Love life!!!

Posted May 17, 2017 by María Ximena 1071
Live carefully. Know your limits. I am perfectly happy not climbing a rock wall or running. I am perfectly happy riding my 3 wheel bike, fishing, going to museums and national parks. The mind controls happiness and my happiness is from God. Trust God and he will give you happiness.

Posted Jul 26, 2017 by Chuck 2001
Living with Osteopetrosis is great. You just need to know your own personal physical at limitations and stick within them. I enjoy my life, I don't let my disease dictate what I can and can't do.

Posted Jul 31, 2017 by Karen 1160
To be happy, we focus on what we are thankful for - instead of the limitations due to the disease. Multiple family members have spent the majority of their lives in wheelchairs due to this disease. We have looked at the wheelchair as a tool that has allowed us to still 'live' our lives.

I write in a journal daily...focusing on the positives in our lives. I use positive music as a wonderful mood enhancer. I share in online communities, trying to help others who are dealing with this disease. All of these things allow me to focus on happiness, to focus on being thankful for every day we're alive and able to create new memories with our loved ones.

Posted Sep 9, 2017 by lorirdavis 1452
It is part of who I am. I have good days and bad. My faith in God and the love of my family keep me going

Posted Sep 28, 2017 by Mary 2550
As stated...live carefully but joyfully. Know physical limitations. Try to be my own medical advocate by researching every article I can find online about osteopetrosis so I can have an intelligent and knowledgeable conversation with medical professionals in order to be able to make informed decisions on surgeries and treatments.

Posted Dec 3, 2018 by karmavet 660
Translated from portuguese Improve translation
Have a lot of patience to give all the support that they need and lots of Love

Posted Sep 15, 2017 by Paula 2500

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