Who am I? Perhaps the most oft-pondered question of all is the existential question of one’s identity! Our identity defines us, containing the traits, memories, experiences, values and relationships that create our sense of self. And it involves our physical characteristics, some of which we have little control over, for instance physical impairments. Disability is a specific identity context, one that’s knotty and vexed. What constitutes disabled? Does it define me? A mother approached our helpline asking if her university-bound son would be considered disabled. With the huge variabilities between those with Marfan syndrome, it’s difficult to definitively say.

Q: My son is looking to go to university in September and I wondered if you know if the government include Marfan syndrome as a disability?

A: As you know, each person with Marfan syndrome is affected differently. The definition of disability under the Equality Act 2010 is that the person has a physical or mental impairment that has a substantial and long-term negative effect on their ability to do normal daily activities. Long term means 12 months or more.  

In addition, a progressive condition is one that gets worse over time. People with progressive conditions can be classed as disabled. Marfan syndrome is progressive 

Marfan syndrome is not on the government list of conditions which automatically qualify. However, if you can get a letter from your son's GP stating what difficulties he is expecting at University, this should be sent on to relevant department.  

Problems other Marfan students have found the university helpful in solving are as follows: 

1) Easy fatiguability - Ask if the university could provide on-campus accommodation, at least for the first year.  

2) Poor eyesight - Adam should sit near the front for all lectures. Written material can be requested in large print.   

3) Difficulty writing quickly - one student took a tape recorder, and sat in the front row, with his microphone placed on the lecturer's desk. He could then write up his notes after the lecture.  

4) Take personal laptop to lectures, and exams with permission, to speed up note-taking , and writing exams with answers submitted electronically.

5) Extra time on exams if handwriting slow- educational establishments should offer 20 minutes extra per hour.  

6) Carrying heavy textbooks can be difficult if he has scoliosis or back pain. Suggest a knapsack or request 2 sets of text books - one for accommodation if off campus, and one set in campus lockers.  

Also the NUS based on campus are always helpful. It's worth making an appointment to talk to them if you need to ask any questions or need more support. They are there on the student's behalf.  

I hope this is helpful.

By Dr Anne Child & Victoria Hilton

The Marfan Trust is registered in England and Wales under charity number 328070 at Guy Scadding Building, Dovehouse Street, London SW3 6LY. Contact us at [email protected] or by phone on + 44 (0)20 7594 1605
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