19

Is it easy to find a partner and/or maintain relationship when you have Fabry disease?

People with experience in Fabry disease give their opinion on whether it is easy or not to have a partner or to maintain a realationship when you are diagnosed of Fabry disease. What are the possible difficulties in having a relationship?

Couple and Fabry disease

Is it easy to find a partner and/or maintain a relationship when you have Fabry disease?


Fabry disease is a rare genetic disorder that affects various organs and systems in the body. It is caused by a deficiency of an enzyme called alpha-galactosidase A, which leads to the buildup of a specific type of fat in the body's cells. This condition can present several challenges in terms of finding and maintaining a romantic relationship, but it is important to remember that every individual's experience is unique.


Finding a Partner:


When it comes to finding a partner, having Fabry disease may present some additional considerations. It is crucial to be open and honest about your condition with potential partners. This allows for informed decision-making and ensures that both individuals are aware of the challenges that may arise. While some people may be hesitant to enter into a relationship with someone who has a chronic illness, others may be understanding and supportive.


Communication:


Communication is key in any relationship, and this holds true for individuals with Fabry disease as well. It is important to have open and honest conversations about your condition, its impact on your daily life, and any limitations or challenges you may face. This allows your partner to better understand your needs and provide the necessary support.


Education:


Another crucial aspect is educating your partner about Fabry disease. Providing them with resources, such as informational websites or pamphlets, can help them gain a better understanding of the condition. This knowledge can foster empathy and enable them to be more supportive and accommodating.


Support:


Having a strong support system is essential for individuals with Fabry disease. This includes not only your partner but also friends, family, and healthcare professionals. Your partner can play a vital role in providing emotional support, accompanying you to medical appointments, and assisting with daily tasks when needed.


Maintaining a Relationship:


While maintaining a relationship with Fabry disease may have its challenges, it is certainly possible with the right approach and support. Here are some strategies that can help:


1. Self-Care: Taking care of your own physical and emotional well-being is crucial. This includes managing your symptoms, following your treatment plan, and seeking support when needed. By prioritizing your own health, you can contribute to the overall health of your relationship.


2. Open Communication: Continuously communicate with your partner about your needs, limitations, and any changes in your condition. This allows both individuals to adapt and find solutions together.


3. Quality Time: Spending quality time together is important for any relationship. Plan activities that you both enjoy and that accommodate your specific needs. This can help strengthen your bond and create lasting memories.


4. Emotional Support: Lean on your partner for emotional support when needed. Share your feelings, fears, and concerns with them, and allow them to do the same. By being there for each other, you can navigate the challenges of Fabry disease together.


5. Seek Professional Help: Consider seeking professional help, such as couples therapy or counseling, if you feel it would benefit your relationship. A trained therapist can provide guidance and support tailored to your specific circumstances.


Conclusion:


While finding a partner and maintaining a relationship with Fabry disease may present some unique challenges, it is important to remember that love and understanding can overcome many obstacles. By being open, communicative, and supportive, individuals with Fabry disease can build and maintain fulfilling relationships. Remember, each person's experience is different, and it is essential to find a partner who is understanding, compassionate, and willing to navigate the challenges together.


Diseasemaps
1 answer

Couple and Fabry disease

Fabry disease life expectancy

What is the life expectancy of someone with Fabry disease?

2 answers
Celebrities with Fabry disease

Celebrities with Fabry disease

1 answer
Is Fabry disease hereditary?

Is Fabry disease hereditary?

2 answers
Is Fabry disease contagious?

Is Fabry disease contagious?

2 answers
Natural treatment of Fabry disease

Is there any natural treatment for Fabry disease?

2 answers
ICD9 and ICD10 codes of Fabry disease

ICD10 code of Fabry disease and ICD9 code

3 answers
Living with Fabry disease

Living with Fabry disease. How to live with Fabry disease?

2 answers
Fabry disease diet

Fabry disease diet. Is there a diet which improves the quality of life of p...

2 answers

World map of Fabry disease

Find people with Fabry disease through the map. Connect with them and share experiences. Join the Fabry disease community.

Stories of Fabry disease

FABRY DISEASE STORIES
Fabry disease stories
Was not diagnosed till my 3rd stroke at age 34. Now 38 years old total of 6 strokes. The last stroke was February 2, 2016. Was on the right side where the others have been on the left. I actually feel better than prior. My eye site is better as well ...
Fabry disease stories
1980's- gastro issues/ burning hands and feet. Told females weren't affected so couldnt be Fabry's. Dad diagnosed in 1960's so I was tested at birth and always knew "carrier!" Dad had kidney/ strokes. Sister, 2 nephew and 1 niece with Fabrys.  Hav...
Fabry disease stories
Born and raised in Tokyo. I also have an American cidesin ship because my mother is American. I am a university student now. I get my treatment once in 2 weeks. Don't have much difficulty in Daly life but I can't exersis alot do to my Simpsons of h...
Fabry disease stories
I was diagnosed in 2014 and started ERT in April 2015 for fabry.  It has signicantly affected my heart, which is enlarging.  Hopefully treatments will arrest this and maybe even improve it.  I am living a good life and am very grateful for the tre...
Fabry disease stories
I am the only person in my family to have Fabrys. I was diagnosed by my optician. It's ice to have a name to this disease as I have lived with it since I was 5 years of age. I have a mutant gene, so Fabrys starts with me and ends with me. I'm under t...

Tell your story and help others

Tell my story

Fabry disease forum

FABRY DISEASE FORUM

Ask a question and get answers from other users.

Ask a question

Find your symptoms soulmates

From now on you can add your symptoms in diseasemaps and find your symptoms soulmates. Symptoms soulmates are people with similar symptoms to you.

Symptoms soulmates

Add your symptoms and discover your soulmates map

Soulmates map