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Muscular Dystrophy and Reproductive Health

intimate relationships for muscular dystrophy affected people.
Samyak Lalit
Samyak Lalit | December 26, 2022 (Last update: January 4, 2023)

Samyak Lalit is an author and disability rights activist. He is a polio survivor and the founder of projects like Kavita Kosh, Gadya Kosh, TechWelkin, WeCapable, Dashamlav and Viklangta Dot Com. Website: www.lalitkumar.in

Reproductive health is a very common topic of concern for people with disabilities. We have started this series where we are individually tackling the common causes of physical disabilities and their effect on a person’s overall reproductive health that includes their ability to get physically intimate, their fertility, and the genetic effect on the offspring. We have already discussed polio and its impact on reproductive health. In this write-up, we have discussed Muscular Dystrophy and its impact on the fertility and reproductive health of the affected person.

Can People with Muscular Dystrophy Get Physically Intimate

Muscular Dystrophy (MD) is a group of genetic conditions that are marked by progressive muscle weakening and wasting. Being a ‘group’ of conditions, Muscular Dystrophy manifests itself in varied form in different individuals. Some may have symptoms of muscle wasting from a very young age while others may not have any symptoms until adulthood. The severity of symptoms may also differ widely. Therefore, two people with MD may have entirely different physical strength and limitations.

Physical intimacy, if we are talking about intercourse, is a physically taxing activity requiring both strength and stamina. Hence, depending on the severity of the symptoms it can be really challenging for some people with muscular dystrophy. The muscle weakness and wasting due to MD may cause pain, fatigue as well as diminished strength and energy thus impacting the ability to get physically intimate.

However, it should be noted that this does not make any person with Muscular Dystrophy an asexual person. The natural urge and desire of a such person are just like any other individual. Clear communication between the partners and counseling with a trained clinician can help in finding a way around, and accommodating the disability in intimate activities. Some people may also get benefited from assistive devices made for the purpose.

Does Muscular Dystrophy Affect an Individual’s Fertility?

The next big question is whether the fertility of individuals with muscular dystrophy gets affected by their condition. The answer here is also not very simple and straightforward. Being a much-diversified group, it can have different answers for different individuals.

For example, individuals with Myotonic Dystrophy Type 1 (DM1), a subcategory within Muscular Dystrophy, are at an increased risk of fertility-related issues due to gonadal atrophy i.e. shrinking of the size of testicles, the male reproductive gland. The atrophy causes a downgrade in sperm quality. On the other hand, the effect of the condition on females has not been documented well by the researchers.

It can be concluded that some forms of muscular dystrophy may have an adverse effect on a person’s fertility. However, MD does not make every affected individual infertile or impotent. In fact, there are many individuals with muscular dystrophy, both male and female, who are biological parents. Women with muscular dystrophy typically conceive well and have healthy pregnancies.

Can Muscular Dystrophy be Transferred Genetically?

Yes! Being a genetic condition, muscular dystrophy can be transferred from a parent to their offspring. Muscular dystrophy is a condition that runs in the family. So, any individual with muscular dystrophy must plan their pregnancy very carefully and experts must be a part of this planning.

Broadly classifying, there are three ways in which muscular dystrophy is genetically passed to the offspring.

  • X-linked Recessive Inheritance – This type of inheritance of Muscular Dystrophy is caused by the transfer of defected X chromosome passed by the mother. The mother passing the such gene to the offspring may or may not have symptoms of MD; they are only the ‘carrier’ of the mutation. Duchenne Muscular Dystrophy (DMD) and Becker Muscular Dystrophy (BMD) and one type of Emery-Dreifuss Muscular Dystrophy (EDMD) are caused by X-linked Recessive Inheritance. This is the reason, these conditions are typically seen in males. A female child receiving such a gene from her mother typically remains asymptomatic (or may manifest occasional symptoms) and works like a carrier of the mutation.
  • Autosomal Dominant Inheritance – This inheritance occurs when either of the parent’s chromosomes carries the mutation and is passed to the offspring. Myotonic Muscular Dystrophy, Facio-Scapulohumeral Muscular Dystrophy (FSHD), some types of Congenital Muscular Dystrophy (CMD), one type of EDMD, and some types of Limb-Girdle Muscular Dystrophy (LGMD) are caused with autosomal dominant inheritance.
  • Autosomal Recessive Inheritance – This inheritance is the situation where both parents pass a mutated chromosome to the offspring. Most types of CMD, one rare type of EDMD, and some types of LGMD are caused by autosomal recessive inheritance where both the parents are affected with muscular dystrophy and they pass the gene to their offspring.

Planning Pregnancy When You are a Carrier of Muscular Dystrophy

If you have muscular dystrophy, you know you are a carrier of a genetic disease that you can pass to your child. So, you must be very careful when you plan to have a baby. A few types of muscular dystrophy have an ‘amplification’ effect i.e. the severity of the condition keeps increasing as it passes from one generation to the other.

It is always advisable to consult a specialist as different kinds of muscular dystrophy and their severity affects different individual differently. Depending on your exact situation you may get different recommendations regarding conceiving and the special care needed during pregnancy, labor, and child delivery.

Experts or Specialists that need to be Part of Your Journey

  • Genetic Counselor – The first specialist you need to meet before you conceive is a genetic counselor. The counseling will help you understand the probability of your child inheriting the condition depending on your and your partner’s condition. If the probability of your child inheriting the condition is significantly high, your counselor may suggest a solution like IVF. In IVF, eggs and sperm are fertilized in labs and are genetically tested before implantation in the mother’s uterus.
  • Obstetrician or Maternal-Fetal Medicine Doctor – A consultation with an obstetrician will be beneficial in understanding the similarities and differences you will face during your pregnancy and childbirth. This will help you in staying mentally prepared for the coming events. In some types of muscular dystrophy, the fetus may get the manifestation of the condition in the embryo stage making the birth even more complicated. It can cause increased fluid in the amniotic cavity resulting in the early onset of labor. Or the baby may not move in the heads-down position thus making a C-section mandatory. The chances of miscarriage and low birth weight of the baby are also higher in women with muscular dystrophy.
  • Cardiologist – It would be important for you to meet a cardiologist if your particular condition has an impact on your heart. This is important for your safety during pregnancy and childbirth.
  • Physician – It would be best if you stay in touch with your physician who caters to your general medical needs and who can refer you to a specialist if the need arises. If your condition affects your mobility and respiration, you must discuss it with your doctor. This is because your pregnancy may aggravate your symptoms and may make your pregnancy even harder.
  • Physical Therapist – Though every woman needs some form of physical therapy advice during their pregnancy, a woman with muscular dystrophy should not avoid this at any cost. Pain and fatigue are common occurrences during disability but a woman with muscular dystrophy may experience them in a more pronounced way. The issue of losing balance may also increase. So, you would require a personalized recommendation for exercise and physical activity.

Will Breast Feeding will be an Issue?

No. If a woman with muscular dystrophy has given birth to a child she can breastfeed the child like any other mother. However, she may feel little extra pain and exhaustion and thus may require more rest time.

Conclusion

Muscular Dystrophy is a condition that affects different aspects of reproductive health, though the degree of effect may vary from individual to individual. It is a condition that may affect a person’s ability to get physically intimate. And, being a genetic disorder it is transferred from one generation to the other. However, in some cases, the offspring may not develop any symptoms rather they work as the carrier of the mutated gene. A woman with symptoms of muscular dystrophy can conceive but the pregnancy can come with additional challenges for the mother as well as the child.

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